ArticlePDF Available

Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Services Clients Regarding Coercion to Test, Insurance and Employment

Authors:

Abstract and Figures

Survey and interview-based findings from the Consumer Study of the Australian Genetic Discrimination Project (GDP) are reported. These involve perceptions and experiences of clinical genetics clients regarding coercion to undertake genetic testing and insurance and employment-related issues. Genetic discrimination is defined as the differential treatment of asymptomatic individuals because of actual or presumed genetic differences. Eligible adults (n=2667) who had requested predictive testing for designated mature-onset conditions, 1998 to 2003, were surveyed; 951/1185 respondents met asymptomatic inclusion criteria. Neurological disorders and familial cancers were relevant to the majority. Sources of coercion, where reported, included family members, doctors, geneticists/counsellors and life insurers. Insurance and employment related issues were raised; some respondents reported avoiding or being advised not to apply for life insurance. Interview data further elucidate context and impact of coercion and/or negative treatment. The experiences of respondents where neurological conditions were relevant differed from others. Implications of the study are discussed.
Content may be subject to copyright.
Australian Journal of Emerging Technologies and Society
Vol. 5, No. 2, 2007, pp: 63-83
Investigating Genetic Discrimination in Australia:
Perceptions and Experiences of Clinical Genetics Service
Clients Regarding Coercion to Test, Insurance and
Employment
Sandra Taylor1, Susan Treloar2, Kristine Barlow-Stewart3, Margaret Otlowski4, Mark
Stranger4
1Department of Social Work and Human Services, Central Queensland University,
Rockhampton, Australia; 2Centre for Military and Veterans’ Health, University of
Queensland, Brisbane, Australia; 3Centre for Genetics Education, Royal North Shore
Hospital, Sydney, Australia; 4School of Law, University of Tasmania, Hobart, Australia.
Abstract
Survey and interview-based findings from the Consumer Study of the Australian Genetic
Discrimination Project (GDP) are reported. These involve perceptions and experiences of
clinical genetics clients regarding coercion to undertake genetic testing and insurance and
employment-related issues. Genetic discrimination is defined as the differential treatment of
asymptomatic individuals because of actual or presumed genetic differences. Eligible adults
(n=2667) who had requested predictive testing for designated mature-onset conditions, 1998
to 2003, were surveyed; 951/1185 respondents met asymptomatic inclusion criteria.
Neurological disorders and familial cancers were relevant to the majority. Sources of
coercion, where reported, included family members, doctors, geneticists/counsellors and life
insurers. Insurance and employment related issues were raised; some respondents reported
avoiding or being advised not to apply for life insurance. Interview data further elucidate
context and impact of coercion and/or negative treatment. The experiences of respondents
where neurological conditions were relevant differed from others. Implications of the study
are discussed.
Keywords: Genetic discrimination; Australia; coercion; insurance; employment; clinical
genetics clients.
©Australian Journal of Emerging Technologies and Society 2007
ISSN 1449 - 0706
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
Introduction
Consumer perceptions and experiences regarding human genetic technologies and
associated legal, ethical and social issues are topical issues in Australia as elsewhere
(Australian Law Reform Commission & Australian Health Ethics Committee of the National
Health & Medical Research Council NHMRC (ALRC/AHEC) 2003; Geller 2002; Petersen &
Bunton 2002). A key ethical, legal and social concern associated with the rapid development
of genetic testing technology has been the potential for genetic discrimination, defined as the
differential treatment of asymptomatic individuals or their relatives on the basis of real or
assumed genetic differences or characteristics (Otlowski et al 2002; Geller 2002; Billings et
al. 1992). Although such differential treatment can potentially be to the advantage or
disadvantage of an individual, most concerns have related to negative treatment.
Information about a person’s genetic makeup, characteristics or health can be suggested
from their family history or from the results of a genetic test. There are currently over 1300
conditions for which genetic tests are available in clinical settings and a further 300 are being
developed in research contexts (http://www.genetests.org). Within the Australian context,
more than 220 gene tests are now available; in addition, tests can be accessed
internationally (ALRC/AHEC 2003). Such tests can be used to diagnose genetic conditions,
to screen population groups for genetic risks or predispositions and to identify carriers of
faulty genes in the context of reproductive risk. Genetic tests can also be utilised to assess a
person’s potential for developing conditions in the future through identifying mutations in
genes that cause or predispose individuals to illness (Haan 2003); such tests are referred to
as pre-symptomatic or predictive tests depending upon whether the result can indicate
definite development of a future condition or an increased risk of developing such a condition
in the future, respectively.
Identifying potential characteristics of an individual’s future health through predictive genetic
testing when the person is otherwise healthy and free of any symptoms of the relevant
genetic condition, is potentially beneficial in many ways. It can enable early detection,
treatment and preventive strategies regarding particular genetic conditions and assist in
people’s choices and life planning where there is no treatment or prevention. However,
predictive testing can also be associated with the potential for individuals to be treated
differently based on what people know or even wrongfully assume about the tested
individual’s genetic characteristics as a result of them being tested. Such differential
treatment can constitute genetic discrimination. There are many genetic conditions that can
now be predictively tested for and which are therefore associated with the potential for
genetic discrimination; these include neurodegenerative conditions like Huntington disease
(HD) or familial Alzheimer disease and familial cancers such as inherited predisposition to
breast or bowel cancers1.
Reports of negative genetic discrimination have been published in Australia (ALRC/AHEC
2003, Barlow-Stewart & Keays 2001), the United States (Billings et al. 1992; Geller et al.
2002, 1996; Hall et al. 2005), Canada (Lemmens et al. 2004), the United Kingdom (Low et al.
1998) and Europe (Hendricks 1997; Sandberg 1995). Such reports have been in regard to
alleged negative treatment in organisational or institutional contexts like health, life and
disability insurance and employment (Otlowski 2005, 2002, 2001); clinical, health care and
blood bank services; fertility and adoption services and intake to armed services (Barlow-
Stewart & Keays 2001; Billings et al. 1992; Geller et al. 2002; Lapham et al. 1996).
Discussion of insurance within the Australian context relates mainly to life, rather than health,
insurance, as the latter is community-rated in Australia, similar to Canada and the United
64
Taylor et al: Investigating Genetic Discrimination in Australia
Kingdom; this is unlike the United States where individually-rated health insurance
significantly increases the potential for genetic discrimination (ALRC/AHEC 2003; Barash
2000). Insurers in Australia are also legally entitled to discriminate between applicants
because of exemptions under the Commonwealth Disability Discrimination Act (1992) (Cth),
provided their decisions can be substantiated actuarially (Otlowski 2001).
Negative treatment can also occur in informal or social contexts like families or interpersonal
relationships where legal analysis may be less relevant (Geller et al. 2002; Lemke 2005;
Treloar et al. 2004). In such instances, for example where the reproductive fitness of a
person with a known genetic risk is called into question, negative treatment can be based on
prejudicial attitudes and social stigma regarding people perceived to have ‘bad blood’
(Lemke 2005; Otlowski 2005). Experiencing genetic discrimination, according to Geller et al
(2002, p.256), can result in a range of personal and psychological reactions for both the
individual and their close others including ‘loss of self-esteem, alienation from family
members and others, and alterations in family dynamics’. Findings from a recent Canadian
study undertaken by Bombard et al. (2007) describe some of the strategies that individuals
have adopted in order to cope with and manage the risk that they may encounter genetic
discrimination if they are found to have the positive Huntington disease mutation. Such
strategies, like ‘keeping low’, avoiding both genetic testing and insurance applications or
engaging in highly selective disclosure of their genetic risk or genetic test information have
now been reported in several studies (Bombard et al. 2007; Geller et al. 1996; Peterson et al.
2002; Taylor 2004). This suggests that, in spite of ongoing societal, ethical and legal
concerns about the potential for genetic discrimination to occur, it has for many individuals
become a real threat and one that is significantly impacting upon their behaviour.
Within the Australian context, anecdotal accounts and case studies of genetic discrimination
have been reported for some years (for example, Barlow-Stewart & Keays 2001; Taylor
1998). In the 2001 study by Barlow-Stewart and Keays, 48 cases were identified, mostly in
regard to access to life insurance as well as some alleged discrimination in employment.
Partially as a result of this research, genetic discrimination became a focus of the national
inquiry in Australia into The Protection of Human Genetic Information conducted jointly by the
ALRC and the AHEC (ALRC/AHEC 2003). The report from the inquiry entitled Essentially
Yours, provided a comprehensive overview of the issue of genetic discrimination as well as
recommendations which included the establishment of a dedicated body in Australia to
investigate and monitor this and other genetics-related issues in Australia in an ongoing way.
In 2005, the Commonwealth Government established a Human Genetics Advisory
Committee under the auspices of the National Health and Medical Research Council to
advise government regarding genetic issues, genetic health services and related issues
(Commonwealth Department of Health and Ageing 2005). Whilst these developments have
been very significant within the Australian context, the issue of genetic discrimination has not
been empirically investigated in Australia until recently (Taylor et al. 2004).
The potential for people to experience genetic discrimination therefore is now widely
accepted within Australia and elsewhere (ALRC/AHEC 2003). Information about the risk of
such discrimination for people on the basis of their family history information or genetic
testing where undertaken is readily available through genetic support and information
services in Australia (for example, Centre for Genetics Education (CGE) 2003) while clinical
genetics services routinely incorporate discussion and advice about life insurance issues into
pre-test counselling protocols (Human Genetics Society of Australasia (HGSA) 1999).
Genetic discrimination is a complex concept to investigate (Treloar et al. 2004). While Barash
(2000) noted that genetic discrimination is a ‘household word’ within the United States due to
©Australian Journal of Emerging Technologies and Society 2007 65
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
its potential for broad occurrence involving health insurance, in Australia and countries that
have community-rather than individual-rated health care, it is a less familiar concept within
the general community and therefore challenging to investigate empirically. The community-
based rating of health insurance which is legislatively endorsed in Australia may also
significantly reduce the scope for genetic discrimination to occur in this country when
compared with others (Otlowski 2001). People’s familiarity with the concept and its relevance
to them can influence participation rates in community surveys; at the same time explicit use
of the term ‘genetic discrimination’ within a research context can elicit response bias (Wertz
2002). Establishing the prevalence of genetic discrimination within any community is also
potentially difficult as it requires a relevant and defined population from within which a
proportion of cases of alleged discrimination can be identified (Treloar et al. 2004).
Finally a key feature of genetic discrimination is that it refers to differential treatment of a
person who has no manifest symptoms of a condition or disorder and which has occurred
allegedly on the basis of their genetic characteristics or makeup, either real or assumed.
Determining that an individual is clinically free of any manifest expression of symptoms of a
genetic disorder at the time of their alleged negative treatment is theoretically and practically
difficult. Further, determining that an incident of alleged discriminatory treatment has been
unequivocally based on a person’s inherent genetic characteristics rather than any other
factors is also difficult. In spite of these difficulties and because most accounts to date
regarding genetic discrimination have been anecdotal, anonymous or case study reports,
some commentators have questioned whether community concerns about genetic
discrimination are based more on fear rather than reality (Nowlan 2003; Wertz 2002). Wertz
(2002 p.496), for example, proposed that fear of discrimination, rather than being well-
founded, may reflect “a ‘genetic dread’ that pervades society”.
This paper presents selected findings from the Genetic Discrimination Project (GDP)2, a
comprehensive investigation of genetic discrimination in Australia that has been undertaken
from 2002 to 2005 (Otlowski, Taylor & Barlow-Stewart 2002). The GDP was of triangulated
design and comprised several sub-projects. The Consumer Study sub-project aimed to
survey a targeted sample of asymptomatic clients of clinical genetics services regarding their
attitudes and experiences of alleged genetic discrimination, to establish the prevalence of
such discrimination within the sample, to describe the domains within which such incidents
occurred and, where possible, to follow up and verify the extent to which such incidents could
be said to constitute genetic discrimination. This paper reports selected survey findings and
case studies from the Consumer Study which relate to respondent perceptions and
experiences regarding coercion to undertake testing and insurance and employment issues.
A forthcoming paper (Taylor et al., 2007, paper in review) describes the consumer survey
methodology in detail including response bias information and presents other survey findings
regarding participants’ perceptions about benefits and disadvantages of having genetic
information, the prevalence of specific incidents of alleged discrimination within the sample
and the domains in which discrimination had allegedly occurred. Other GDP papers to date
have reported on methodological challenges associated with investigating genetic
discrimination (Treloar et al. 2004), the use of genetic test results in insurance underwriting in
Australia for the period 1999-2003 (Otlowski et al. 2007a), the use of legal remedies for
pursuing genetic discrimination in Australia (Otlowski et al. 2007b) and a comparison of
attitudes about genetic issues between consumers in this study and the broader Australian
community (Barlow-Stewart et al. 2005). Finally, other forthcoming papers will report on
attitudes and experiences of Australian employers regarding genetic testing in the workplace
and the verification of incidents of alleged genetic discrimination as reported by consumers.
66
Taylor et al: Investigating Genetic Discrimination in Australia
Materials and Methods
A targeted postal survey was undertaken of eligible clients of 14 Australian clinical and
research genetic services who agreed to participate in the study (Appendix A). Participating
services were located in every Australian State and serviced both urban and rural
communities. Ethical clearance was obtained from all relevant Human Research Ethics
Committees (HRECs) with regard to the research.
The Sample
In keeping with the research focus on differential treatment that was allegedly based on an
individual’s genetic characteristics, participating services identified from their records
asymptomatic adults aged 18 years and over who had requested, or inquired about,
predictive genetic testing for a range of mature-onset genetic conditions, during the period
January 1998 to December 2003. The genetic conditions included hereditary
hemochromatosis; inherited predisposition to blood clots (hereditary thrombofilia); hereditary
breast and ovarian cancers; hereditary bowel cancer (familial adenomatous polyposis (FAP)
and hereditary non-polyposis colon cancer (HNPCC); familial melanoma; rare syndromes
e.g. multiple endocrine neoplasia (MEN), Von Hippel-Lindau syndrome; neurodegenerative
conditions (spino-cerebellar ataxia; Huntington disease; early onset Alzheimer disease;
motor neurone disease; prion disease); familial hyper-cholesterolaemia; familial hypertrophic
cardiomyopathy; hereditary hypertension; hereditary emphysema (e.g.α-1 antitrypsin
deficiency); adult polycystic kidney disease and ‘other’. Clinical services provided the
research team with all mailed individuals’ gender, relevant genetic condition and year of birth
for later comparison between those mailed and those who responded to the survey.
Clinical services mailed all eligible individuals a research package that contained a cover
letter about the research, a Participant Information Sheet, a questionnaire and a reply-paid
envelope. Individuals received reminder packages approximately two weeks after initial mail
out. Consent was implied by completion and return of questionnaires. Respondents could
also volunteer their contact details on returned questionnaires for clarification of their survey
responses and/or further follow-up.
Questionnaires were developed by preliminary interviews and focus groups with consumers,
advice from the GDP’s Expert Reference Group, and piloting. Explicit use of the term ‘genetic
discrimination’ was avoided in the questionnaire so as to minimise bias (Geller et al. 2002;
Treloar et al. 2004). The questionnaire comprised seven sections: genetic status and family
history; genetic testing; perceptions and experiences regarding benefits and/or
disadvantages associated with having genetic information; specific incidents of perceived
disadvantage or unfair treatment; life insurance and employment information; attitudes
towards genetic issues; and socio-demographic information. Respondents were asked to
complete their questionnaires with regard to the genetic condition most relevant to them,
which they specified from a list provided1.
Where follow up contact details were provided by respondents, interviews were conducted by
SDT as possible. The interviews varied in length from around 10 to 30 minutes and aimed to
confirm and/or clarify respondents’ written responses regarding their experiences and
perceptions.
Data Analysis
Survey data were analysed using the Statistical Package for the Social Sciences (SPSS)
Version 12.0 (SPSS Inc. 2004). Basic descriptive statistical analyses were undertaken,
©Australian Journal of Emerging Technologies and Society 2007 67
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
including frequencies, cross-tabulations and categorical association testing which was based
on Pearson chi-square testing; where cell counts were less than 5, cross tabulations were
based on empirical p-values and exact tests.
Results
From 2667 eligible individuals who were mailed questionnaires, 1185 respondents returned
fully or partially completed questionnaires. Respondents from every Australian State and
Territory were represented in the survey. The survey response rate was 51% after 319
packages marked as ‘return to sender’ or reported inappropriate for inclusion in the study
were deleted from the total responses.
In keeping with the research focus of the study, stringent criteria were applied to the
respondent sample regarding asymptomatic status. Eighty percent, or 951/1185 respondents
met these criteria regarding asymptomatic status at the time of questionnaire completion. Of
these, 96% (916/951) nominated one genetic condition regarding which they had a family
history, a known genetic risk or a genetic test result. The most frequently nominated genetic
conditions were Huntington disease (33%; n = 301), hereditary breast or ovarian cancer
(31%; n = 280), hereditary bowel cancer (21%; n = 185) and hemochromatosis (5%; n = 45).
For purposes of analysis, genetic conditions of relevance were organised into four groups:
Group 1 neurodegenerative conditions (37%; n = 332), Group 2 familial cancers (53%; n =
481), Group 3 hemochromatosis (5%; n = 45) and Group 4 ‘other’ genetic conditions (5%;
n=46). Group 4 comprised a range of conditions that were substantively different in their
characteristics, as a result of which results were often difficult to interpret; Group 4 results
are therefore reported less frequently than results for other groups.
Characteristics of the Sample
The average age of respondents was 46 years, with 69% (n = 656) being female and 77% (n
= 727) being married or partnered. Australia was the place of birth for 87% (n = 828) of
respondents and 14 individuals (1.5%) identified as being of Aboriginal or Torres Strait
Islander descent. Overall the sample was characterised by relatively high educational levels
with almost half having diploma, bachelor or postgraduate qualifications. Almost two thirds of
respondents reported that they were working full time at the time of the survey. At the time of
the survey, 69% respondents held private health insurance and 41% held life insurance
cover, compared with 49% and 33% respectively of the Australian population (Australian
Institute of Health and Welfare (AIHW) 2004; Investment and Financial Services Association
(IFSA) 2002).
Ninety-five percent of survey respondents who answered the question regarding genetic
testing (n = 729) reported having had a predictive genetic test3, with 2001 being the median
year of testing. Thirty nine percent of respondents overall (n = 286) reported having received
a positive test result, that is, a test result confirming the presence of the genetic mutation
associated with the relevant genetic condition or disorder in their family; 55% (n = 399)
reported having received a negative test result, that is, a test result confirming that the
relevant mutation was not present; and 6% (n = 44) reported not having been tested or not
having received their test result at the time of the survey. Figure 1 indicates the percentages
of negative and positive test results for respondents according to genetic condition groupings
of relevance. The high proportion of test-positive respondents in relation to
hemochromatosis was likely to be associated with recruitment from specialist a clinical
research collection rather than a general clinical genetics service.
68
Taylor et al: Investigating Genetic Discrimination in Australia
0
10
20
30
40
50
60
%
Neurological
Familial cancers
Haemochromatosis
Other
Relevant genetic condition groupings
Positive test
Negative test
Figure 1. Percentage of positive and negative genetic test
results for respondents according to genetic condition
groupings of relevance
Perceived or Experienced Coercion to Undertake Genetic Testing
Most respondents reported feeling no coercion or pressure to undertake a genetic test from
the range of potential sources provided. Where reported, sources most frequently nominated
from a given list were family members, doctors, geneticists/counsellors, life insurance
companies and researchers; Table 1 provides further details. Genetic test result was not
significantly associated with reporting of coercion.
Table 1. Reported sources and amount of experienced
coercion or pressure to undertake genetic testing.
None Some A Lot Total
Source of felt coercion
N % N % N %
Family member 489 68 174 24 57 8 720
Doctor 615 88 68 10 12 2 695
Geneticist/counselor 622 89 65 10 9 1 696
Insurance company 630 96 16 2 11 2 657
Employer 649 99 7 1 2 0 658
Bank/financial lender 653 99 4 1 2 0 659
Researcher 637 96 23 4 3 0 663
Other 537 96 13 3 7 1 557
©Australian Journal of Emerging Technologies and Society 2007 69
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
The most frequently nominated ‘other source’ of coercion was ‘self’ (n=13), with respondents’
attached comments describing a sense of responsibility to undertake testing in order to
clarify the genetic risks of significant others such as their children. There were no significant
differences in experiences of coercion (‘none’, ‘some’, ‘a lot’) across the four groups for any
sources apart from insurance companies ( = 24.8, P < .001) where higher than expected
levels of coercion were reported by respondents for whom neurological conditions (Group 1,
ND) were relevant. In this case, 22/27 (82%) of respondents who reported feeling ‘some’ or
‘a lot’ of coercion were in Group 1 (ND), four were in Group 2 (familial cancers) and one was
in Group 3 (hemochromatosis).
2
6
χ
Table 2 presents selected examples of interviewed cases reflecting perceptions and
experiences in regard to coercion. Details of three respondents who had undergone
presymptomatic testing for Huntington disease and who received a negative test result are
provided.
Table 2. Perceived or experienced coercion to undertake genetic testing.
Personal
Information
Description of Experience
Reported Impact
Huntington disease
Case A.
Male aged 46
years. No past or
present health
problems.
Negative gene
test.
Applications for income protection insurance accepted
with restrictions prior to negative test result. Required
insurance as a business owner. Able to get insurance at
standard rate after negative test result was sent to
insurer.
Felt coercion to have testing in
order to secure insurance.
Case B.
Male aged 32
years. No past or
present health
problems.
Negative gene
test.
Respondent had superannuation but required income
protection insurance. Application was accepted with
significant loading prior to negative test result. Other
companies had declined. Required insurance due to
type of employment. Able to get insurance at standard
rate only after his negative genetic test result was sent
to insurer.
Financial planner
recommended the man
undertake testing due to
loading.
Case C.
Male aged 54
years. Negative
gene test.
Respondent applied for life insurance as he established
his own business after arriving in Australia. Insurer rang
him to advise that he would have to be tested for HD
(and demonstrate a gene negative result) if he wanted
the insurance. Respondent thinking already of
undertaking testing so as to be able to inform his
children of their risk.
Respondent reported coercion
by insurer to undertake testing
but also acknowledged family
reasons for testing.
Insurance
Given its significance within the genetic discrimination context, one section of the
questionnaire asked about respondent perceptions and experiences regarding life insurance.
At the time of the survey, the types of insurance products held by respondents related to
private health cover (69%), death (41%), accidental death (32%), mortgage (29%) and
disability/income protection (24%). Significantly more than expected male respondents and
fewer than expected females held life insurance ( = 4.4, P < .05), disability/income
protection insurance ( 2= 15.6, P < .001) and accidental death insuranc 2
1
χ
= 5.0, P <
.05) at the time of the surve
2
1
χ
1
χ
e (
y.
70
Taylor et al: Investigating Genetic Discrimination in Australia
Respondents were asked about the importance of life insurance given their family history or
genetic test information. On a scale from zero (very unimportant) to ten (very important), the
median score of (720/951) respondents was seven. Of 668 respondents who perceived a
need for life insurance in light of their family history or genetic test information, 79% (n=529)
reported needing the same amount of insurance as they otherwise would have, 3% (n=17)
needed less and 18% (n=121) needed more. Regarding the purchase of insurance products,
94% (650/695) reported not purchasing more insurance than they would otherwise have, 6%
(40/711) reported purchasing more and 1% (7/711) indicated they did not know. Three
percent of question respondents (24/709) reported feeling the need to make multiple
simultaneous applications in case of refusal. Two percent of question respondents reported
that relatives had withheld family history information from them (13/711) and that they had
withheld risk information from relatives (11/711), respectively, because of insurance
concerns.
Of 182 respondents who reported applying for life insurance products with knowledge of their
level of risk, 146 respondents reported they were offered standard cover in all applications
and 18 in some applications. Thirty-nine respondents reported being refused cover for one or
more life insurance products, involving mostly death cover and income protection insurance
(where specified). Types of non-standard cover, most frequently relating to life insurance and
income protection, involved higher premiums (n=28), limited cover (n=17) and limited term
cover (n=8). Type of cover offered did not differ significantly across the four groups or
according to whether respondents were mutation positive or negative at the time of survey;
respondents were also describing insurance cover that had been set in place prior to testing
and therefore according to family history. Where reported, communication to respondents
about non-standard cover was done verbally (31/61), in writing (19/73), directly from the
company (23/69) or through an agent or broker (37/55). Twelve respondents reported having
been asked to undertake predictive testing by a life insurance company, agent or broker, but
there were no apparent differences between groups.
Thirteen percent of question respondents reported ‘avoiding’ (92/710) or ‘giving up’ (93/711)
applying for insurance because of fears of disclosing family risk information; 9% (62/713) had
been advised not to bother applying because of the genetic condition in their family or their
risk. When asked who had advised them, life insurance companies, agents or brokers
(n=29); family members (n=16); genetic clinical advisors (n=7); friends (n=3); medical
practitioners (n=1) and an accountant (n=1) were nominated. Group 1 (ND) respondents
were significantly more likely, and Group 2 (FC) or 3 (HH) respondents less likely, to report
avoiding applying for insurance ( = 12.1, P < .01), ‘giving up’ before applying ( = 13.1, P
< .01) and being advised ‘not to bother’ applying for insurance ( = 19.7, P < .001). Seven
percent of question respondents (47/703) had postponed testing in order to put desired life
insurance into place first; where nominated, sources of advice to postpone were clinical
genetics advisors (n=11), themselves i.e. it was a personal decision (n=9), family members
(n=5) and medical practitioners (n=2).
2
2
χ
2
2
χ
2
1
χ
Several respondents provided accounts of their experiences regarding life insurance at follow
up interview. Table 3 presents details of five cases involving genetic testing for the
mutations(s) causing predisposition to bowel and several other cancers (HNPCC), breast
and ovarian cancer and Huntington disease. With regard to the health insurance issue
reported by Case A, health insurance is community-rated in Australia although waiting
periods can be applied by insurers in regard to particular pre-existing illnesses.
©Australian Journal of Emerging Technologies and Society 2007 71
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
Table 3. Insurance issues
Personal
Information
Description of Experience
Reported Impact
Hereditary non-polyposis colorectal cancer (HNPCC)
Case D.
Female aged 40
years. No past or
present health
problems. Positive
gene test HNPCC
Respondent held trauma and income protection insurance with
insurance company linked to employer’s superannuation
policy. Respondent took voluntary redundancy (un-related to
genetic test result) but felt forced to stay with insurance
company linked to previous employer although this was not
financially optimal for her. Respondent did not want to reveal
her genetic test information to a new insurer. In addition, when
respondent applied for private health insurance, she was
advised she would have a 12 month wait for coverage
because of her ‘pre-existing condition’. Respondent sought
advice from staff of genetics service who successfully
advocated on her behalf; they argued that a positive genetic
test result did not equate with having familial cancer.
Respondent having regular
bowel screening but anxious
about future coverage by
health insurer. She perceives
she was limited in her choice
of insurer which had financial
implications.
Case E.
Male aged 28 years.
No past or present
health problems.
Positive gene test
HNPCC
Respondent applied after testing through a broker for life
insurance (death cover) and trauma insurance. Respondent
declared family history and test result honestly and also noted
he was having regular screening. He was offered death cover
but denied trauma insurance.
Self-employed; newly married and
birth of first child occurred recently.
Respondent was greatly
concerned about providing for his
family’s financial future.
Huntington disease
Case F.
Female aged 36
years. Tested for
HD; waiting for
result
Respondent contacted broker to inquire about applying for life
insurance; disclosed family history of mother’s recent HD
diagnosis. Mother had long-standing diagnosis of
schizophrenia and respondent had believed until recently that
she was at risk of mental illness. Aunt had suicided but now
believed to have had HD. Broker was unable to secure
insurance and advised the respondent and her husband that it
would be very difficult to secure insurance or to make any
claim even if she was successful in gaining insurance.
Respondent did not proceed with any applications.
Respondent reported feeling
‘very powerless and
disheartened’; still in shock at
being at risk for HD. Described
the insurance experience as
being the first indication that
“life had changed, I am in a
new space, I am vulnerable
and discrimination is possible’.
Case G.
Female aged 51
years.
Intermediate range
test result for HD5
Respondent undertook presymptomatic testing for HD and
received an ‘intermediate’ test result5. She requested of her
broker if she could apply for an increase in her life insurance
policy. Broker said that he was aware of genetic conditions as
he also had a family history of a genetic condition (not for HD)
and advised her not to apply. Respondent understood that she
was never likely to develop HD herself but did not challenge
the broker’s advice. Respondent reported that her sister will
not be tested because of insurance concerns and in order to
protect her (sister’s) son, his privacy and his right to access
insurance.
Respondent accepted broker’s
advice although she knew her
situation was ‘more
complicated than normal for
Huntington’s disease’.
Breast and ovarian cancer (BRCA1)
Case H.
Female aged 47
years. Tested
positive for
BRCA1 gene
Respondent had had life insurance for >10 years. She had
purchased insurance policy in light of family history of breast
cancer. She and husband had 4 children. Respondent
regarded her insurance policy as ‘my gift to them if I died’.
Respondent was subsequently tested and found to be positive
for BRCA1 mutation. Later respondent lost her job in rural
recession and could not afford to make premium payment on
time; 10 days overdue. Insurer advised her that policy was
cancelled. She and husband challenged the decision but
insurer advised that although they would have liked to re-
instate her policy they could not in light of new information
regarding genetic test result and she must re-apply.
Respondent’s re-application for insurance was rejected.
Respondent described the
impact of this insurance
experience as being
significant: “I was angry and
totally devastated’.
72
Taylor et al: Investigating Genetic Discrimination in Australia
Employment
Regarding employment, less than one third (n=135, 31%) of respondents to whom it applied
reported that their employers were aware of their family history of the relevant genetic
conditions or of their genetic risk in relation to such conditions. Few employers (n=12) or
potential employers (n=9) had ever asked for such information. Of those who had asked for
such information, three respondents nominated the Australian Defence Forces, one
nominated both the Police Force and a medical practice, and three nominated pre-
employment medical assessments without specification.
Several respondents described the consequences for them of employers knowing details of
their genetic status including situations where sympathetic employers approved respondents’
requests to rearrange work schedules in order to undertake testing. Some respondents also
described difficulties they had encountered in the employment area. Table 4 presents details
of two cases which were related to Huntington disease testing.
Table 4. Employment issues
Personal
Information
Description of Experience
Reported Impact
Huntington disease
Case I.
Female aged 44
years.
No symptoms.
Negative gene test
HD.
Family history of HD and new diagnosis in family led to
respondent seeking a predictive test. She was
employed in service industry with significant
responsibilities. When respondent ‘innocently’
requested time off for an appointment for the genetic
test, employer immediately advised her to “step down
and take time off” until the result was known. Employer
also expressed concern about their own liability
regarding employee’s continued performance in the
public arena even though test result was unknown.
Employer also requested the test result which
respondent provided when her gene negative result
became available.
Respondent believed that as
soon as her employer and co-
workers knew she was under-
taking a genetic test for HD,
they assumed she had the
condition and responded to her
very differently than before
they had this information, for
example, constant surveillance
and increased supervision of
her work. Respondent was
sole bread-winner for her
family at the time. She found
the genetic testing stressful
and was simultaneously
dealing with the implied threat
of losing her employment; this
had a significant negative
impact on her and family.
Respondent challenged the
negative treatment however
and reported that this resulted
in greater education of her
employer and co-workers re
genetic issues.
Case J.
Female aged 45
years. Currently
well and self-
employed. Positive
gene test HD.
Termination of employment three months after
disclosure of the test result to employer with rationale
that the company was being restructured. Termination
settlement was made with a non-disclosure clause.
The respondent later learnt that the employer had
informed colleagues that she had resigned due to a
serious illness.
Participant’s reaction to the
test result led to short term
depression. Privacy and loss
of employment due to mis-
understanding of meaning of
test result.
©Australian Journal of Emerging Technologies and Society 2007 73
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
Concerns about Life Insurance and Employment
Respondents were asked if any concerns they had regarding the use of genetic information
by third parties related more to employment, life insurance, both equally, neither or they
could stipulate other concerns. Five percent nominated employment alone, 20% nominated
insurance alone, 49% said they were equally important and 22% nominated neither as being
important. Three percent nominated other concerns relating to privacy, confidentiality or
personal ownership of genetic information (n=12); the need for family members to be aware
(n=3); human rights (n=2); and discrimination (n=2).
Discussion
The Genetic Discrimination Project is the first comprehensive research program of its kind to
be conducted in Australia. While concerns about, and accounts of alleged genetic
discrimination have been reported in the Australian context, (ALRC/AHEC 2003; Barlow-
Stewart and Keays 2001; Otlowski 2002, 2001; Taylor 1998), there has been no
comprehensive empirical research to date regarding the issue or its prevalence in Australia.
While the Consumer sub-project of the GDP investigated clinical genetics services clients’
perceptions and experiences regarding various aspects of genetic discrimination, this paper
reports perceptions and experiences regarding coercion to undertake predictive genetic
testing and insurance and employment-related issues.
The 51% response rate was comparable to other mail-based surveys in Australia (Brown et
al. 2004; Sale et al. 2004; Steginga et al. 2001) and to a large UK study undertaken by Low
and colleagues (1998) regarding genetic discrimination in life insurance. Greater participation
by women in our survey (69% of the sample) is consistent not only with social science
research generally (Broom 2002) but with genetics-related activity where Richards notes
(1996 p. 258) ‘[I]n almost all aspects of genetics activity, it is the female members of a family
who most often take the initiating role’. Richards (1996) describes women as most likely to
adopt roles of ‘genetic housekeepers’ and ‘kin-keepers’ within families. Uptake of genetic
testing for some conditions like mature-onset neurological conditions, carrier testing for cystic
fibrosis and susceptibility testing for inherited cancer syndromes appears also to be at
differentially greater rates by at-risk women compared with their male counterparts (Taylor
2005). The relatively higher educational level of respondents is also consistent with findings
of some studies relating to utilisation of genetic testing by people where HD is relevant
(Meiser & Dunn 2000).
Within our study, respondents overall reported no or little coercion to undertake predictive
testing. Our sample comprised mainly individuals who undertook predictive testing however
and their reported experiences of coercion may differ from people who chose not to
undertake testing. Where reported, experiences of coercion included those where
respondents believed external pressure had been applied to them to undertake predictive
testing as well as those that reflected subjective feelings to undertake testing because of its
availability or for other reasons (Geller et al. 2002; Petersen & Bunton 2002; Taylor 2004).
Within family and healthcare contexts, individuals have reported a sense of coercion to
undertake testing associated with their sense of responsibility and altruistic desire to help
relatives like offspring determine their risks (Chapman 2002; Hallowell 1999; Taylor 2004)
and to help others by participating in genetic research (Treloar et al. 2007). In our study, the
most common sources of coercion where cited were family, doctors and
geneticists/counsellors; this differed from the frequently expressed concern that third parties
like life insurers or employers are most likely to be coercive (Otlowski 2005). The potential
complexity and challenge for people in terms of family dynamics and relationships where
74
Taylor et al: Investigating Genetic Discrimination in Australia
highly relevant genetic information is shared and where genetic test decisions and results
can significantly impact on close others has been widely discussed (Chapman 2002;
Chapman & Burn 1999; Cox & McKellin 1999; Geller et al. 2002; Hallowell 1999; Richards
1996; Taylor 2004). How this might translate into experiences of coercion within the family
context is largely under researched but respondents in our study certainly reported incidents
of differential treatment and coercion within family contexts. How individuals and family
members are managing and negotiating these challenges within the context of their shared
genetic legacies and the family context merits further investigation.
Clinical geneticists and counsellors were also a source of coercion reported by respondents
in our study. Geller et al (2002) described instances where clinical professionals pressured
people to undertake prenatal testing or advised them not to have children; similar incidents
were reported in our study and were experienced as both highly coercive and distressing
(Taylor et al. 2007, manuscript in review). The expression of such imperatives by well-
respected authority figures like clinical or medical professionals can represent and reinforce
the social stigma that is experienced by many families with genetic conditions like HD (Cox &
McKellin 1999; Taylor 2004). The potential for genetics clinicians to be ‘directive’ in their
counselling and information-giving has also been widely discussed in the literature (Marteau
& Richards 1996; Petersen & Bunton 2002). Where familial cancers are relevant, clinically-
based discussions about causative mutations in families and genetic testing may be more
likely to occur in a shared family-based context (Chapman & Burn 1999; Haan 2003)
compared with those regarding predictive testing for neurological conditions like HD where
the focus may be more individualised and ‘private’ and primarily involve just the individual
seeking testing plus a support person. The potential for differential treatment or
discrimination exists for positive-testing individuals in relation to both types of conditions
however (Bombard et al. 2007; Lynch et al. 2003; Markman 2004; Peterson et al. 2002).
Whether some individuals could experience testing within the familial cancer context as
potentially coercive due to authoritative clinical input or simply out of a sense of responsibility
to family in that context is unknown. However, the principle of non-coercion remains central
to best clinical genetics practice as does the responsibility of the clinician to ensure that the
client’s decision to undertake predictive genetic testing for any disorder is underpinned by
fully autonomous and well-informed consent (Haan 2003).
While survey respondents also reported a relatively small amount of coercion in the
insurance context, such experiences varied across groups. The significantly greater degree
of insurer-based coercion that was reported by people where neurological conditions, mostly
HD, were relevant is likely to reflect the historical position and long-standing experiences of
such individuals regarding difficulty accessing life insurance products in Australia. Unlike
people for whom conditions like familial cancers or hemochromatosis are relevant,
individuals where HD is relevant have historically been denied access to life insurance
products altogether in Australia, have had significant loadings imposed or been denied
insurance even with exclusions (Otlowski et al. 2007a). Such underwriting decisions by life
insurers appear legal at face value within the current context, based on an exemption
granted to them under the Disability Discrimination Act (1992) (Ch) and provided such
decisions can be substantiated actuarially. The actuarial justification in regard to the single-
gene, highly penetrant mutation for Huntington disease has generally been regarded as
conclusive therefore (Otlowski et al. 2007a; Otlowski 2005) although assumptions about the
lack of variability in HD for insurance-related underwriting have been challenged in recent
times (Gutiérrez & MacDonald 2004; Otlowski et al. 2007a). The approach taken by the
Australian life insurance sector is not the same for example as that in the United Kingdom
where a positive test result or family history regarding HD does not necessarily result in the
©Australian Journal of Emerging Technologies and Society 2007 75
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
outright denial of the life insurance application or the imposition of loadings or penalties.
However, recommendations from the recent ALRC/AHEC Inquiry into the Protection of
Human Genetic Information in Australia (ALRC/AHEC 2003) have included the need for
insurers within the Australian context to improve their policies, practices and communications
with consumers regarding insurance underwriting that utilises genetic information.
People with family histories or positive genetic test information regarding HD have
experienced insurance-related difficulties for over two decades in Australia as predictive
genetic testing for HD, with its associated insurance implications, was the earliest predictive
test for a mature-onset disorder to be offered in this country4 (Taylor 1994; Turner et al.
1988). The challenges associated with accessing life insurance products for these individuals
and families have therefore been cumulative over many years and have typically involved
multiple family members and relatives. For such individuals, life insurance has realistically
only been accessible to those who have agreed to undertake testing and have been
subsequently able to demonstrate a negative genetic test result to their insurer; those
receiving a positive test result however become virtually uninsurable within the current
Australian context. The cumulative experiences of families whose ‘uninsurable’ status is
legally and socially affirmed through sanctioned insurance exemptions within anti-
discrimination legislation can reinforce the social stigma associated with such conditions.
Under all of these circumstances, it may not be surprising that survey respondents where HD
was relevant described feelings of ‘coercion’ associated with undertaking testing within the
insurance context. Such a sense of coercion to test may be particularly pertinent where life
insurance products are needed by people for purposes of business, self-employment or
financial or mortgage borrowing.
Although the nature of insurance-related experiences as reported by people for whom HD is
a relevant genetic condition appeared to differ from other respondents, insurance was rated
as an important issue by most respondents in the survey. As noted, unlike the United States,
health insurance in Australia with regard to both the universal Medicare system and private
health insurance, is community- rather than individually-rated and thus information about
family history or genetic test information, as with all medical information, is not assessable for
purposes of accessing either public or private health care services. Community-rated health
insurance in Australia is also likely to significantly reduce the potential for genetic
discrimination to occur in this country as health insurance has been a primary site for such
discrimination in the United States (Otlowski et al. 2002).
Given that gender has been shown to influence uptake of life insurance and associated
products (Gandolfi & Miners 1996), reported uptake of life insurance, as well as the reporting
of insurance-related concerns, may have been greater had there been more male survey
respondents. The discrepancy between respondent and population rates in regard to life
insurance could reflect either the increased importance of insurance to respondents or
‘adverse selection’ where individuals with genetic information that is unavailable to insurers
seek large amounts of life insurance (Otlowski et al. 2002). The potential for adverse
selection to occur has been an issue of concern to life insurers. Respondents reported
declaring their genetic risks honestly within the life insurance context however and almost all
reported that they had not purchased more insurance products than they would otherwise
have, given their family history or genetic test information; Zick et al (2000) found similarly.
Several respondents reported that, on the advice of clinicians, they had organised life
insurance prior to undertaking predictive testing or had submitted insurance applications
simultaneously to maximise chances of success; Bombard et al. (2007) and Geller et al
(1996) reported similarly. These options are consistent with current clinical policy and
76
Taylor et al: Investigating Genetic Discrimination in Australia
practice guidelines in Australia and do not contravene applicants’ disclosure obligations to
insurers provided relevant family history is disclosed (Centre for Genetics Education, 2003;
Human Genetics Society of Australasia 1999).
Some respondents, most likely those where neurological conditions like HD were relevant,
also reported avoiding, giving up or being advised not to apply for life insurance, based on
their or others’ beliefs that their applications would be unsuccessful. Similar strategies and
self-protective behaviours used by people in order to pre-empt the risk that they will be
differentially treated and/or to protect themselves from such risks have been reported in other
studies (Bombard et al. 2007; Geller et al., 1996; Hall et al., 2005; Low et al., 1998). These
experiences were reported by several respondents at interview as having significant impact
or implications for them. Inexperienced individuals, advised by insurers, agents and brokers
that their insurance applications will not succeed, and also likely to be aware that other family
members have been unable to access insurance as in the case of HD, are unlikely to contest
the advice. Low et al. (1998) questioned how well life insurance personnel like sales agents
or brokers are informed about human genetics to be in a position to provide such preliminary
risk assessments for potential life insurance applicants. Some respondents in our survey
reported being advised at first point of inquiry by brokers and agents, as well as by insurers
per se, that their applications would not succeed, resulting in an elimination of their
applications prior to formal risk assessment. Life insurance under-writing decisions in
applications involving genetic factors can vary across companies, even where the same
genetic condition is relevant (Otlowski et al. 2007a; Gutiérrez & MacDonald 2004). Recently
in Australia for example, some life insurers appear willing to be more flexible in their
underwriting in regard to conditions like HD than has traditionally been done (Otlowski et al.
2007a). The practices of front-line advisors in the life insurance sector where genetic factors
appear relevant to applications seem worthy of attention. The elimination of insurance
applications before they have been properly assessed, coupled with consumers who may be
self-selecting out of insurance for self-protection and fear of negative treatment, are all likely
to be impacting on life insurance sector reports in Australia that small numbers only of
insurance applications have been unsuccessful because of genetic risk factors (Otlowski et
al. 2007a).
As noted above, the recent ALRC/AHEC Inquiry into the Protection of Human Genetic
Information in Australia (ALRC/AHEC 2003) has resulted in recommendations to Australian
life insurers to improve their policies, practices and communications with consumers
regarding insurance underwriting that utilises genetic information. All consumers are entitled
to submit applications for life insurance products, to have them assessed accurately and to
be advised of the reasons for special conditions or denial of insurance as well as their right to
appeal such decisions. The potential support of clinical genetics specialists in support of life
insurance applications where genetic factors are involved is also worthy of widespread
promotion to the general community, the clinical genetics community and through networks
of genetic support groups (Otlowski et al. 2007a).
Regarding employment, also a central issue when analysing genetic discrimination
(ALRC/AHEC 2003; Geller et al. 1996; Knoppers et al. 2004; Low et al. 1998; Otlowski et al.
2002), a small number only of respondents reported that employers or potential employers
had requested genetic information or that it was required in pre-employment medical
assessments; where mentioned, public rather than private sector employers were nominated.
The benefits for several respondents of employers knowing genetic information were also
noted. The lack of employers’ use of genetic information reported in the survey concurs with
findings from the recent national inquiry (ALRC/AHEC 2003) which concluded that Australian
©Australian Journal of Emerging Technologies and Society 2007 77
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
employers were not seeking, or using, genetic information for employment-related purposes
on any large scale, in spite of it being currently not illegal for them to do so. However several
respondents did report accounts of employment-related experiences at follow up interview.
The ALRC/AHEC (2003) has recommended that employers should not be permitted to
collect or use genetic information regarding workers or potential workers except where it
specifically relates to health and safety). Survey respondents also expressed equal concern
about both employers and insurers having legally-sanctioned access to genetic information;
such attitudes are consistent with those of the broader Australian community (Barlow-Stewart
et al. 2005).
It should be noted that there were several limitations in our study. Findings are based on
cross-sectional data and self-reported perceptions and experiences relating to a specified
time period, that is pre-2003 Australian context. The asymptomatic status of respondents
was not able to be independently verified although the sample was based on most recent
clinical assessment of asymptomatic status by genetics clinicians and rigorous exclusion
criteria were applied to the data prior to its analysis. Sampling through clinical genetics
services in Australia is likely to have resulted in respondents who were positively oriented
towards predictive genetic testing and who had other characteristics that are unlikely to be
representative of the broader at risk populations. The survey questionnaire was also quite
complex and there was some evidence that non-specific wording and use of the term ‘risk’
may have resulted in individuals with negative test results self-selecting out of the study or a
section of the questionnaire because they erroneously believed it did not apply to them.
Finally, while the term ‘genetic discrimination’ was not explicitly used in the questionnaire in
order to minimise bias, its inclusion in the approach letter and information sheet might have
had an unknown effect on response.
Conclusion
The perceptions and experiences of Australian consumers constitute a significant
perspective regarding the complex phenomenon of genetic discrimination or negative
treatment based on genetic information acquired from family history or genetic testing. The
full public and preventive health benefits associated with the increasing availability of genetic
testing will not be fully realised unless individuals can freely engage with genetic testing
without fear of negative treatment as a result of it. Individuals and families are now reporting
experiences of both coercion and negative treatment and are developing strategies to
minimise or pre-empt anticipated occurrences. Coercion to undertake testing can occur
subtly within a range of contexts including family, health, clinical genetics, and insurance and
employment contexts. The potential impact on individuals and families of coercion as well as
post-test negative treatment is substantial. It is imperative that the community and all
relevant sectors be informed about these issues, that individuals are not openly or covertly
coerced into undertaking genetic testing and that the potential for negative treatment in
contexts like insurance and employment is monitored and pro-actively addressed.
Endnotes
1 For detailed information about genetic conditions, modes of inheritance, treatment and
genetic testing, see the website of The Centre for Genetics Education:
http://www.genetics.com.au
2 GDP website www.gdproject.org
78
Taylor et al: Investigating Genetic Discrimination in Australia
3 Missing data were high on this question because some respondents, mostly those with a
negative test result, may have misinterpreted an instruction in this section of the
questionnaire and mistakenly skipped several questions
4 Predictive testing for Huntington disease was first offered in Australia in the mid 1980s,
significantly earlier than for many other conditions regarding which testing has more recently
become available
5 A small percentage of test results for Huntington Disease cannot be interpreted with
certainty; such test results are described as being in the ‘intermediate’ range rather than
represent a definitive result. Individuals receiving intermediate test results are unlikely to ever
develop symptoms of HD themselves but their children may face an increased risk
(Langbehn et al. 2004).
Acknowledgements
Financial support for this work has come from the Australian Research Council #DP0208853.
Sincere thanks goes to all members of the Expert Reference Group that advised the
researchers, as well as to all those individuals who participated in the study. Ms. Kellie
Chenoweth and Ms. Bree Ryan provided valuable research assistance to the project. We
also thank Meg Tighe and Warren Laffan of the University of Queensland’s Social Research
Centre for advice and assistance in the conduct of the survey and data entry and
management. In addition, we acknowledge the following staff within clinical genetics services
around Australia who facilitated the distribution of the questionnaire to eligible clients:
Associate Professor John MacMillan at Queensland Clinical Genetics Service and Professor
Lawrie Powell and Sr Jeannette Dixon at Queensland Institute of Medical Research, in
Queensland; Dr Meredith Wilson and Ms Fiona Richards at The Department of Clinical
Genetics at The Children’s Hospital at Westmead, Associate Professor Judy Kirk and Ms
Anna Silvester at The Familial Cancer Service at Westmead Hospital, Dr Anne Turner at The
Dept of Medical Genetics at the Sydney Children Hospital, Sydney and Dr Matthew Edwards,
Ms Sarah Bennett and colleagues at Hunter Genetics in Newcastle, in New South Wales; Dr
Martin Delatycki and Ms Roslyn Tassicker at Genetic Health Services Victoria at the Royal
Children’s Hospital Melbourne and Associate Professor Geoffrey Lindeman, Dr Clara Gaff
and colleagues at The Familial Cancer Centre, and Professor Finlay Macrae at Colorectal
Medicine & Genetics at the Royal Melbourne Hospital, in Victoria; Associate Professor Eric
Haan and Ms Janet Goldstone at The South Australian Clinical Genetics Services and Dr
Graeme Suthers at The Familial Cancers Unit at the South Australian Clinical Genetics
Services, in South Australia; Dr Carmela Connor and Ms Kate Frenchman at The
Neurosciences Unit at Graylands Hospital and Dr Jack Goldblatt, Ms Karen Harrop, Ms Julia
Mansour and colleagues at The Genetic Services of Western Australia, in Western Australia;
and Dr David Amor and Dr Jo Burke at The Tasmanian Clinical Genetics Service at the
Royal Hobart Hospital and Dr Kurt Fisher and Ms Pam Marshall at The Department of
Psychiatry, Launceston General Hospital, in Tasmania.
©Australian Journal of Emerging Technologies and Society 2007 79
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
References
AIHW (Australian Institute of Health and Welfare) (2004) ‘Australia’s Health 2004’
http://ww.aihw.gov.au Accessed July 2005.
ALRC/AHEC (Australian Law Reform Commission & Australian Health Ethics Committee of
the National Health & Medical Research Council NHMRC) (2003) Essentially Yours:
The Protection of Human Genetic Information in Australia, Sydney: Commonwealth of
Australia.
Barash, C.A. (2000) ‘Genetic Screening for Hemochromatosis: Then and Now’ Genetic
Testing, Vol. 4, No.2: pp. 213-218.
Barlow-Stewart, K.K., Taylor, S.D. & Otlowski, M.F. (2005) ‘Knowing your genes: freedom,
burden or power?’ in Wilson, S., Meagher, G., Gibson, R., Denemark, D. & Western, M.
(eds) Australian Social Attitudes: The First Report, Sydney, UNSW Press.
Barlow-Stewart, K. & Keays, D. (2001) ‘Genetic discrimination in Australia’ Journal of Law &
Medicine, Vol. 8, pp. 250-262.
Billings, P.M., Kohn, M., de Cuevas, J., Beckwith, J., Alper, J.S. & Natowicz, M.R. (1992)
‘Discrimination as a Consequence of Genetic Testing’ American Journal of Human
Genetics, Vol. 50, pp. 476.
Bombard, Y., Pensiner, E., Decolongon, J., Klimek, M.L.M., Creighton, S., Suchowersky, O.,
Guttman, M., Paulsen, J.S., Botorff, J.L. & Hayden, M.R. (2007) ‘Managing genetic
discrimination: Strategies used by individuals found to have the Huntington disease
mutation’ Clinical Genetics, Vol. 71, pp. 220-231.
Broom, D. (2002) ‘Gender and health’ In: Germov, J. (ed) Second Opinion: An Introduction to
Health Sociology Melbourne: Oxford, pp. 95-111.
Brown, S., Bruinsma, F., Darcy, M.A., Small, R. & Lumley, J. (2004) ‘Early discharge: no
evidence of adverse outcomes in three consecutive population-based Australian
surveys of recent mothers, conducted in 1989, 1994 and 2000’ Paediatric and Perinatal
Epidemiology, Vol. 18, pp. 202-213.
CGE (Centre for Genetics Education) (2003) ‘Genetic Information and Life Insurance
Products in Australia’ http://www.genetics.com.au/pdf/pubs/lifeinsurance.pdf Site
accessed March 2007
Chapman, E. (2002) ‘Ethical Dilemmas in Testing for Late Onset Conditions: Reactions to
Testing and Perceived Impact on Other Family Members’ Journal of Genetic
Counseling, Vol. 11, pp. 351-367.
Chapman, P.D. & Burn, J. (1999) ‘Genetic predictive testing for bowel cancer predisposition:
The impact on the individual’ Cytogenetics and Cell Genetics, Vol. 86, No. 2, pp. 118-
124.
Commonwealth Department of Health & Ageing (2005) ‘Establishment of a human genetics
advisory committee’ http://www.health.gov.au/internet/budget/publishing.nsf/Content/
health-budget2005-hbudget-hfact6.htm Date accessed May 26, 2005
Cox, S.M. & McKellin, W. (1999) ‘”There’s this thing in our family”’: predictive testing and the
construction of risk for Huntington Disease’ Sociology of Health and Illness, Vol. 21,
No. 5, pp. 622-646.
80
Taylor et al: Investigating Genetic Discrimination in Australia
Gandolfi, A.S. & Miners, L. (1996)Gender-Based Differences in Life Insurance Ownership’
Journal of Risk and Insurance, Vol. 63, No. 4, pp. 683-693.
Geller, L.N. (2002) ‘Current developments in genetic discrimination’, in Alper, J.S., Ard, C.,
Asch, A., Beckwith, J., Conrad, P. & Geller, L. (eds) The Double-Edged Helix: Social
Implications of Genetics in a Diverse Society Baltimore: John Hopkins University Press,
pp. 267-285.
Geller, L.N., Alper, J.S., Billings, P.R., Barash, C.I., Beckwith, J. & Natowicz, M.R. (2002)
‘Individual, family, and societal dimensions of genetic discrimination: a case study
analysis’, in Alper, J.S., Ard, C., Asch, A., Beckwith, J., Conrad, P. & Geller, L. (eds)
The Double-Edged Helix: Social Implications of Genetics in a Diverse Society
Baltimore: John Hopkins University Press, pp. 245–266.
Geller, L.N., Alper, J.S., Billings, P.R., Barash, C.I., Beckwith, J. & Natowicz, M.R. (1996)
‘Individual, family, and societal dimensions of genetic discrimination: a case study
analysis’ Science and Engineering Ethics, Vol. 2, pp. 71-88.
Gutiérrez, C. & MacDonald, A. (2004) ‘Huntington’s Disease, Critical illness insurance and
life insurance’ Scandinavian Actuarial Journal, Vol. 4, pp. 279-313.
Haan, E.A. (2003) The clinical geneticist and the "new genetics"Medical Journal of
Australia, Vol. 178, No. 9, pp. 458-462.
Hall, M.A., McEwen, J.E., Barton, J.C., Walker, A.P., Howe, E.G., Reiss, J.A., Power, T.E.,
Ellis, S.D., Tucker, D.C., Harrison, B.W., McLaren, G.D., Ruggiero, A. & Thomson, E.J.
(2005) ‘Concerns in a primary care population about genetic discrimination by insurers’
Genetics in Medicine, Vol. 7, No. 5, pp. 311-316.
Hallowell, N. (1999) ‘Doing the right thing: genetic risk and responsibility’ Sociology of Health
& Illness, Vol. 21, No. 5, pp. 597-621.
Hendricks, A. (1997) ‘Genetics, human rights and employment: American and European
perspectives’ Medical Law, Vol.16, pp. 557-565.
HGSA (Human Genetics Society of Australasia) (1999) ‘Predictive Genetic Testing and
Insurance’ http://www.hgsa.com.au Site last accessed March 2007.
IFSA (Investment and Financial Services Association) (2002) ‘Life Insurance and Genetic
Testing in Australia 2002’ http://www.ifsa.com.au/index.aspx Site accessed March
2006.
Knoppers, B.M., Lemmons, T., Godard, B., Joly, Y., Avard, D., Clark, T., Hamet, P., Hoy, M.,
Lanctôt, S., Lowden, S., Martin, H., Maugard, C., Millett, Y., Simard, J., Vachon, M. &
Zinatelli, F. (2004) ‘Genetics and life insurance in Canada: points to consider’
www.cmaj.ca/cgi/content/full/170/9/1421/DC2) Site accessed September 2005
Langbehn, D., Brinkman, R., Falush, D., Paulsen J. & Hayden M. (2004) ‘A new model for
prediction of the age of onset and penetrance for Huntington’s disease based on CAG
length’ Clinical Genetics, Vol. 65, pp. 267–277.
Lapham, E.V., Kozma, C. & Weiss, J.O. (1996) ‘Genetic discrimination: perspectives of
consumers’ Science, Vol. 274, pp. 621-624.
Lemke, T. (2005) ‘Beyond genetic discrimination: Problems and perspectives of a contested
notion’ Genomics, Society & Policy, Vol. 1, No. 3, pp. 22-40.
©Australian Journal of Emerging Technologies and Society 2007 81
http://www.swin.edu.au/ajets
AJETS Vol. 5, No. 2, 2007, pp: 63-83
Lemmens, T. Joly, Y. Knoppers, B. M. (2004) ‘Genetics and Life Insurance: A Comparative
Analysis’ GenEdit, Vol. 2, pp. 1-14.
Low, L., King, S. & Wilkie, T. (1998) ‘Genetic discrimination in life insurance: empirical
evidence from a cross sectional survey of genetic support groups in the United
Kingdom’ British Medical Journal, Vol. 317, pp. 1632-1635.
Lynch, E.L., Doherty, R.J., Gaff, C.L., Macrae, F.A. & Lindemann, G.J. (2003) ‘Cancer in the
family and genetic testing: implications for life insurance’ Medical Journal of Australia,
Vol. 179, No. 9, pp. 480-483.
Markman, M. (2004) ‘Genetic discrimination arising from cancer risk assessments: A societal
dilemma’ Cleveland Clinic Journal of Medicine Vol. 71, No. 1, pp. 12-18.
Marteau, T. & Richards, M. (1996) The Troubled Helix: Social and Psychological Implications
of the New Human Genetics Cambridge: Cambridge University Press.
Meiser, B. & Dunn, S. (2000)Psychological impact of genetic testing for Huntington's
disease: an update of the literature’ Journal of Neurology, Neurosurgery & Psychiatry,
Vol. 69, pp. 574-578.
Nowlan, W. (2003) ‘A scarlet letter or a red herring?’ Nature, Vol. 421, p. 313.
Otlowski, M.F. (2005) ‘Exploring the Concept of Genetic Discrimination’ Journal of Bioethical
Inquiry, Vol. 2, pp. 165-176.
Otlowski M.F. (2002) 'Employers' use of genetic test information: is there a need for
regulation?' Australian Journal of Labour Law, Vol.15, pp. 1-39.
Otlowski, M. (2001) ‘Is there scope for lawful genetic discrimination in health insurance in
Australia?’ Journal of Law & Medicine, Vol. 8, pp. 427-432.
Otlowski, M.F., Barlow-Stewart, K.K., Taylor, S.D., Stranger, M. & Treloar, S.A. (2007a)
‘Investigating genetic discrimination in the Australian life insurance sector: use of
genetic test results in underwriting 1999-2003’ Journal of Law & Medicine, 14(3): 367-
396.
Otlowski, M.F., Taylor, S.D., Barlow-Stewart, K.K., Stranger, M. & Treloar, S. (2007b, in
press) ‘The use of legal remedies in Australia for pursuing allegations of genetic
discrimination: Findings of an empirical study’ International Journal of Discrimination,
Vol. 9, pp. 3-35.
Otlowski, M.F., Taylor S. D. & Barlow-Stewart, K. K. (2002) ‘Australian empirical study into
genetic discrimination’ Genetics in Medicine, Vol. 4, Issue 5, pp. 392-395.
Petersen, A. & Bunton, R. (2002) The New Genetics and the Public’s Health Routledge,
London.
Peterson, E.A., Milliron, K.J., Lewis, K. E., Goold, S.D. & Merajver, S.D. (2002) ‘Health
insurance and discrimination concerns and BRCA1/2 testing in a clinic population’
Cancer Epidemiology, Biomarkers & Prevention, Vol. 11, pp. 70-87.
Richards, M. (1996) ‘Families, kinship and genetics’ in Marteau, T. & Richards, M. The
Troubled Helix: Social and Psychological Implications of the New Human Genetics
Cambridge: Cambridge University Press.
82
Taylor et al: Investigating Genetic Discrimination in Australia
Sale, M.M., Hazelwood, K., Zimmet, P.Z., Shaw, J.E., Stankovich, J.M., Greenaway, T.M. &
Dwyer, T. (2004) ‘Trends in diabetes management practices of patients from an
Australian insulin-treated diabetes register’ Diabetic Medicine, Vol. 21, pp. 165-170.
Sandberg, P. (1995) ‘Genetic information and life insurance: a proposal for an ethical
European policy’ Social Science & Medicine, Vol. 40, pp. 1549-1559.
SPSS Inc. (Statistical Package for the Social Sciences) (2004) SPSS 12.0 for Windows
2004, http://www.spss.com/spss/ Illinois, USA. Site accessed June 6, 2005.
Steginga, S.K., Occhipinti, S., McCaffrey, J. & Dunn, J. (2001) ‘Men's attitudes toward
prostate cancer and seeking prostate-specific antigen testing’ Journal of Cancer
Education, Vol. 16, pp. 42-45.
Taylor, S.D. (2005) ‘Gender differences in attitudes amongst those at risk for Huntington’s
disease’ Genetic Testing, Vol. 9, No. 2, pp. 152-157.
Taylor, S.D. (2004) ‘Predictive genetic test decisions for Huntington’s disease: Context,
appraisal and new moral imperatives’ Social Science & Medicine, Vol. 58, No. 1, pp.
137-149.
Taylor, S. (1998) ‘A case study of genetic discrimination: Social work and advocacy in a new
context’ Australian Social Work, Vol. 51, pp. 51-58.
Taylor, S. (1994) ‘Demand for predictive genetic testing for Huntington's disease in Australia,
1987 - March 1993’ Medical Journal of Australia, Vol. 161, No. 6, pp. 351-355.
Taylor, S., Treloar, S., Barlow-Stewart, K., Stranger, M. & Otlowski, M. (2007, manuscript in
review) ‘Investigating genetic discrimination in Australia: A large-scale survey of clinical
genetics clients’ perceptions and experiences’ submitted May 2007.
Taylor, S. D., Otlowski, M.F., Barlow-Stewart, K.K., Stranger, M. & Chenoweth, K. (2004)
‘Investigating genetic discrimination in Australia: opportunities and challenges in the
early stages’ New Genetics and Society, Vol. 23, No. 2, pp. 225-239.
Treloar, S.A., Morley, K.I., Taylor, S.D. & Hall, W.D. (2007) ‘”Why do they do it?” A pilot study
towards understanding participant motivation and experience in a large, genetic
epidemiological study of endometriosis’ Community Genetics, Vol. 10, pp. 61-71.
Treloar, S.A., Taylor, S.D., Otlowski, M.F., Barlow-Stewart, K.K., Stranger, M. & Chenoweth,
K. (2004) ‘Methodological considerations in the study of genetic discrimination’
Community Genetics, Vol.7, pp. 161-168.
Turner, D.R., Haan, E.A., Jacka, E., Kalucy, R.S., Burns, R.J., Willoughby, J.O. & Crabb, R.
(1988) ‘Prenatal and adult presymptomatic testing for Huntington's disease’ Medical
Journal of Australia, Vol. 148, pp. 567-573.
Wertz, D.C. (2002) ‘Genetic discrimination – an overblown fear?’ Nature Review Genetics,
Vol. 297, pp. 196-197.
Zick, C.D., Smith, K.R., Mayer, R.N. & Botkin, J.R. (2000) ‘Genetic testing, adverse selection
and the demand for life insurance’ American Journal of Medical Genetics, Vol. 93, pp.
29-39.
©Australian Journal of Emerging Technologies and Society 2007 83
http://www.swin.edu.au/ajets
... Consequently, this research project and the Regulatory Evaluation Report will provide valuable evidence toward, although it will not replace, the FSC's review of the moratorium [14]. The report will also to contribute to fulfilling the PJC's recommendation that the moratorium be reviewed after five years [13]. The Regulatory Evaluation Report will be provided to the Treasurer and the Minister for Health, the Secretaries of their respective Departments, and the Chair of the PJC. ...
Article
Full-text available
Background The use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In Australia, life insurers’ use of genetic test results is legal and self-regulated by the insurance industry (Financial Services Council (FSC)). In 2018, an Australian Parliamentary Inquiry recommended that insurers’ use of genetic test results in underwriting should be prohibited. In 2019, the FSC introduced an industry self-regulated moratorium on the use of genetic test results. In the absence of government oversight, it is critical that the impact, effectiveness and appropriateness of the moratorium is monitored. Here we describe the protocol of our government-funded research project, which will serve that critical function between 2020 and 2023. Methods A realist evaluation framework was developed for the project, using a context-mechanism-outcome (CMO) approach, to systematically assess the impact of the moratorium for a range of stakeholders. Outcomes which need to be achieved for the moratorium to accomplish its intended aims were identified, and specific data collection measures methods were developed to gather the evidence from relevant stakeholder groups (consumers, health professionals, financial industry and genetic research community) to determine if aims are achieved. Results from each arm of the study will be analysed and published in peer-reviewed journals as they become available. Discussion The A-GLIMMER project will provide essential monitoring of the impact and effectiveness of the self-regulated insurance moratorium. On completion of the study (3 years) a Stakeholder Report will be compiled. The Stakeholder Report will synthesise the evidence gathered in each arm of the study and use the CMO framework to evaluate the extent to which each of the outcomes have been achieved, and make evidence-based recommendations to the Australian federal government, life insurance industry and other stakeholders.
... Guidance from the Human Genetics Society of Australasia (HGSA), the representative body for human genetics professionals in Australia and New Zealand, indicates genetics professionals should include a discussion of relevant insurance issues during consultations (10,11). Two published Australian studies have shown that genetics professionals routinely discuss life insurance implications with clients during pre-test counselling sessions (12,13). This takes time in sessions that cover a significant amount of information; however, to our knowledge there are no Australasian studies exploring professional practice in this area. ...
Article
Full-text available
In Australia and New Zealand, by contrast with much of the developed world, insurance companies can use genetic test results to refuse cover or increase premiums for mutually-rated insurance products, including life, income protection and disability insurance. Genetics professionals regularly discuss insurance implications with clients and report the issue as a clinical challenge, yet no studies have examined clinical practices or opinions. This study surveyed genetic counsellors and clinical geneticists from Australia and New Zealand to (i) investigate variability in professional practice across the Australasian clinical genetic workforce relating to the insurance implications of genetic testing, and (ii) ascertain views regarding current regulation of the issue. There was considerable variability in training and clinical policies, especially around the communication of insurance implications. Almost half of participants reported receiving no training on the insurance implications of genetic testing, and almost 40% were unsure whether they could adequately advise clients. A number of deficits in professional knowledge and understanding of the issue were identified. Widespread concerns regarding regulation of this area were reported, with < 10% of Australian participants considering current Australian regulations as adequate to protect clients from genetic discrimination. The findings from this study highlight scope for greater education, consistency and professional training on the issue of genetics and insurance in Australasia, and strong agreement about the need for regulatory reform.
... 39 recommended that employers should not be permitted to collect or use genetic information regarding employees, or potential employees, except when it is specifically related to health and safety. 48 The finding also noted that respondent expressed equal concern about both employers and insurers having legally-sanctioned access to genetic information. Such attitudes are consistent with those of the broader Australian community. ...
Article
Li‐Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition syndrome caused by germline TP53 mutations. Genetic testing is not routinely offered in asymptomatic children at risk of the condition as the benefits are debatable and the attitudes of families and health care professionals (HCPs) may vary. This review assessed the attitudes of families and HCPs towards offering genetic testing to children for LFS, with a focus on perceived advantages and disadvantages and involvement of children in the decision‐making process. We searched three key databases (Medline, PsycINFO and EMBASE) to identify quantitative and qualitative studies. We screened 729 articles identifying eight studies for detailed review. Most parents perceived TP53 genetic testing to be beneficial in childhood, despite previous lack of surveillance guidelines. Parents raised some concerns, including decreased insurability and diminishing the child’s autonomy. Most children tested reported no negative emotional concerns after testing, even if tested positive. Despite generally positive interest clinicians remain hesitant. Most families saw the value in involving children in decision‐making. Families’ acceptance of TP53 testing in childhood was high. This review highlights the need for research on the long‐term psychosocial impacts of testing and the attitudes of families to be reflected in professional guidelines. This article is protected by copyright. All rights reserved.
... 8 It is therefore important that employment be maintained for as long as possible in individuals with preHD, who may eventually develop HD with progressive disablement. While studies have considered the potential for employer discrimination as a result of genetic legacy, [9][10][11] overall there has been a paucity of research that has considered the importance of employment in terms of preHD and, indeed, other neurodegenerative diseases. ...
Article
Huntington's disease (HD) is an inherited neurodegenerative disease involving motor, cognitive, and psychiatric/behavioral impairments that will eventually affect work role functioning. Few objective data exist regarding predictors of workplace disability in HD. The authors explored the predictors of work impairment and disability in a cross-sectional cohort of 656 employed, premanifest HD (preHD) individuals. In this cohort-the majority of whom were female, urban-dwelling, married/partnered, and working full-time, with minimal cognitive impairment, good function, minimal motor abnormality, and no indication of significant mental health issues-the number of participants who reported that they had missed work due to HD was low (2.4%). However, 12% of the study sample reported experiencing impairment while working due to preHD, 12.2% reported work-related activity impairment due to preHD, and 12.7% reported impairment in their overall work ability. Higher numbers of CAG repeats on the mutant allele and having more motor symptoms were associated with significantly higher odds of experiencing workplace impairment. Importantly, several modifiable factors were also found to predict workplace disability. Specifically, higher levels of anxiety symptoms were associated with significantly higher odds of experiencing workplace impairment. Good mental and physical health served as protective factors, where good physical health was associated with 6% lower odds of experiencing impairment or missing work time and good mental health was associated with of 10%-12% lower. The results provide important new knowledge for the development of future targeted intervention trials to support preHD individuals in maintaining their work roles as long as possible.
... 10 In diesem Zusammenhang werden die folgenden Bereiche genannt: Krankenversicherungen (17%), Lebensversicherungen (16%), Erwerbsarbeit (11%), Gesundheitswesen (8%) und Behörden (6%). Eine solche thematische Zentrierung findet sich auch in den bislang vorliegenden Studien aus den USA, Großbritannien und Australien (Geller et al. 1996;Taylor et al. 2007;Erwin et al. 2010). ...
Article
This paper presents the findings of a questionnaire survey about the forms and fields of genetic discrimination in Germany. We asked individuals at risk for four different genetic conditions, which represent the range of diversity in heritable disorders (dominant/recessive, high or low penetrance) as well as the severity and treatability of the symptoms. The questionnaire included standardized and open questions about negative experiences due to (presumed) genetic predisposition and questions with regard to fear of exclusion and stigmatization. The results show that analyses of genetic discrimination must be widened and deepened in three respects. First, people with and without symptoms experience unequal treatment and discrimination because of their genetic condition. Second, the generally ambiguous and ambivalent meaning of genetic knowledge with a potential for discrimination or relief has to be taken into account to a greater extent. Third, analyses also need to focus on the effects of rejection, neglect and disrespect in interactions with family, friends and acquaintances. In sum, the investigation reveals the need for a reorientation and widening of the definition of genetic discrimination.
Article
We examine public policy toward the use of genetic tests by insurers when a positive test makes actuarially fair insurance too expensive for some consumers. With state-dependent utility, consumers may decline actuarially fair insurance if the probability of becoming ill exceeds a threshold. In markets with adverse selection, a positive genetic test may cause all or some high risks to drop out of the market (complete and partial genetic discrimination, respectively). Full participation in the market by all consumers requires cross-subsidization. We show that the consent law and mandatory testing are equivalent. Under complete genetic discrimination, the duty to disclose is never Pareto dominated, but either the code of conduct or consent law can yield the same outcome. Under partial genetic discrimination, the duty to disclose is never Pareto dominated. However, partial genetic discrimination and cross-subsidization imply the information ban is noncomparable to the other policy alternatives.
Chapter
Full-text available
Dieser Beitrag stellt die Ergebnisse der Befragung von Betroffenen der Familiären Adenomatösen Polyposis (FAP), einer Form vererbbaren Darmkrebses, vor. Als Teilstudie der Untersuchung zu „Genetischer Diskriminierung in Deutschland“ interviewten wir die Personengruppe mit (einem Risiko für) FAP, weil diese als grundsätzlich vulnerable Gruppe anzusehen ist, da bei Vorliegen der krankheitsauslösenden Genvariante fast sicher Symptome auftreten und diese unbehandelt zu Krebs führen. Aufgrund der im Vergleich zu anderen genetischen Krankheiten außerordentlich hohen Penetranz, dem besonderen emotionalen Belastungs- und Stigmatisierungspotenzial von Darmkrebs und vor dem Hintergrund der Ergebnisse internationalen Studien gingen wir von einem erhöhten Risiko für Andersbehandlung und Benachteiligung aus.
Article
Full-text available
Since the early 1990s, the term “genetic discrimination” has been used to designate adverse treatment on the grounds of genetic makeup. However, the full spectrum of possible disadvantage associated with genetic information has not been addressed by either the international scientific debate or statutory arrangements on genetic discrimination. Informed by legal contexts, they almost all focus on one specific group: the “asymptomatic ill.” On the basis of the sociological study, “Genetic Discrimination in Germany,” this article proposes to revise the terms of the debate and discusses some limitations of the concept. Drawing on the experiences reported by affected individuals, it advocates a more expansive social understanding which does not require that a person has to be healthy to be at risk of genetic discrimination.
Article
Full-text available
In Part I we proposed a model of Huntington's disease (HD), a highly penetrant, domi-nantly inherited, fatal neurological disorder. Although it is a single-gene disorder, mutations are variable in their effects, depending on the number of times that the CAG trinucleotide is repeated in a certain region of the HD gene. The model covered: (a) rates of onset, depending on CAG repeat length as well as age; (b) post-onset rates of mortality; and (c) the distribution of CAG repeat lengths in the population. Using these, we study the critical illness and life insurance markets. We calculate premiums based on genetic test results that disclose the CAG repeat length, or more simply on a family history of HD. These vary widely with age and policy term; some are exceptionally high, but in a large number of cases cover could be offered within normal underwriting limits. We then consider the possible costs of adverse selection, in terms of increased premiums, under various possible moratoria on the use of genetic information, in-cluding family history. These are uniformly very small, because of the rarity of HD, but do show that the costs would be much larger in relative terms if family history could not be used in underwriting. We point out some difficulties involved in applying a moratorium that recognises simply a dichotomy between 'carriers' and 'non-carriers' of any mutation in a gene when these mutations are, in fact, very variable in their effects. These complexities suggest that restrictions on the disclosure, rather than on the use, of genetic information, if it became established as a principle, could deprive insurers of information needed for risk management even if not used in underwriting.
Article
The availability of predictive genetic technologies, in which the future illnesses of individuals are predicted through genetic analysis, is increasing. There has been considerable debate, however, around the ethical, legal, social and psychological implications of such developments. A case study of potential discrimination on the basis of genetic makeup, one involving the denial of employment, is presented and discussed within the context of the inherited illness of Huntington's Disease. As advocacy is both a standard and a principle of social work practice, it is argued that social workers need to become more aware of this newly-developing arena for potential discrimination as issues of social justice are inherent. It is hoped that the presentation of the case study will contribute to increased awareness and interest in this area.
Article
This article estimates the influence of income and the value of household production on the amount of life insurance purchases for both husbands and wives, and investigates whether the response of life insurance purchases to these two key motives differs by gender. The results indicate that there are meaningful differences between husbands and wives in their demand for life insurance functions. Although money income is the most significant determinant of life insurance holdings for both husbands and wives, there is evidence that contributions to household production also influence the purchase of life insurance.
Article
Recent approaches to the new genetics stress the importance of placing hereditary risk within the context of familial beliefs and dynamics. Nonetheless, few empirical studies on predictive genetic testing have explored the meaning and significance of hereditary risk within everyday life. Drawing upon in-depth interviews with 21 families, this paper examines the social construction of hereditary risk for one adult onset disorder, Huntington Disease. Highlighting the social, biographical and temporal factors that families consider when discussing risk and its modification through predictive genetic testing, we find that Mendelian theories of inheritance seldom provide an adequate framework. Such objectified knowledge makes sense on an abstract level but is ultimately inadequate for describing the fluctuating relevance of risk as it develops within the nexus of familial relations.
Article
This paper reports the findings of an interview study of women (n = 40) attending genetic counselling for hereditary breast/ovarian cancer (HBOC). The analysis indicates that women who attend genetics clinics perceive themselves as having a responsibility to their kin (past, present and future generations) to establish the magnitude of their risk and the risks to other family members, and to act upon this information by engaging in some form of risk management. It is observed that in acknowledging their genetic responsibility for their kin these women not only relinquished their right not to know about their risks, but also committed themselves to undertaking risk management practices which may have iatrogenic consequences. It is argued that the construction of genetic risk as a moral issue can be seen as limiting the choices which are available to women who attend genetic counselling.
Article
Although the Australian Cancer Society recommends against performing PSA tests to screen for prostate cancer, many Australian men currently undergo such screening. This study investigated attitudinal variables that may predict prostate cancer screening behaviors in this context. A questionnaire was administered by mail in a two-phase procedure, first to a sample of 1,461 men (46% response), then to 919 men from the initial sample. Prostate cancer screening behaviors of men > 40 years old were examined. The questionnaire assessed worry about prostate cancer, perceived vulnerability to prostate cancer, belief in the efficacy of PSA testing for detection, having received a PSA test for detection, and the presence of urologic symptoms at the time of testing. Men who had had PSA testing with urologic symptoms at the time of the test were more worried about prostate cancer and perceived themselves as more vulnerable to prostate cancer compared with both asymptomatic tested and untested men. Men who had undergone PSA testing believed the test to be more effective in the detection of prostate cancer than did men who had not. Urologic symptoms act as a risk cue for men to prostate cancer. Asymptomatic men should be considered separately from symptomatic men in the investigation of psychological variables predictive of seeking screening for prostate cancer. These findings are discussed in terms of both the focus and design of interventions to alter prostate cancer screening behavior and their implications for the clinical management of men with urologic symptoms.