Nancy Press

Oregon Health & Science University | OHSU · School of Nursing

Among patients undergoing lung cancer evaluation for newly diagnosed, incidental pulmonary nodules, it is important to evaluate the shared power and responsibility domain of patient-centered communication. We explored Veterans' perceptions of decision making with regards to an incidentally-detected pulmonary nodule. We conducted semi-structured, qu...

Federally funded research on the ethical, legal, and social implications (ELSI) of genomics includes a programmatic charge to consider policy-relevant questions and to communicate findings in venues that help inform the policy-making process. In addressing this goal, investigators must consider the range of policies that are relevant to human genet...

Objective: This study described the prevalence and duration of mothers' breastfeeding infants with phenylketonuria (PKU) and explored factors related to duration of breastfeeding as a surrogate for breastfeeding success. Subjects and methods: Descriptive analysis as performed from an international Internet survey of mothers (n=103) who met the i...

Genomic information has been promoted as the basis for "personalized" health care. We considered the benefits provided by genomic testing in context of the concept of personalized medicine. We evaluated current and potential uses of genomic testing in health care, using prostate cancer as an example, and considered their implications for individual...

The American College of Medical Genetics and Genomics recently issued recommendations for reporting incidental findings from clinical whole-genome sequencing and whole-exome sequencing. The recommendations call for evaluating a specific set of genes as part of all whole-genome sequencing/whole-exome sequencing and reporting all pathogenic variants...

Rationale: Every year, hundreds of thousands of patients are diagnosed with incidentally detected pulmonary nodules, and if lung cancer screening is widely implemented, thousands more will be identified. The psychosocial outcomes associated with incidental nodule detection in general practice settings are virtually unknown. Objectives: The purpo...

Background: Phenylketonuria (PKU) is a rare inborn error of metabolism disorder that if left untreated leads to a life-threatening increase in phenylalanine (Phe) levels. Breastfeeding (BF) an infant with PKU is possible, but requires mastering a complex management routine that combines BF with a special formula to maintain therapeutic Phe levels a...

Background: To reduce suicides among Veterans, the Department of Veterans Affairs (VA) has designated suicide risk assessments for Veterans who screen positive for depression or post-traumatic stress disorder as a national performance goal. Many VA Medical Centers (VAMCs) are using brief suicidal ideation screens, administered in non-mental health...

Introduction: Breastmilk is the healthiest milk for infants. Some clinics encourage mothers of infants with PKU, a rare inborn error of metabolism disorder, to continue breastfeeding (BF) whereas others discourage BF after diagnosis. There is limited discussion about BF and PKU in the literature and the incidence and duration is not known for count...

Background: Full sharing of the electronic health record with patients has been identified as an important opportunity to engage patients in their health and health care. The My HealtheVet Pilot, the initial personal health record of the US Department of Veterans Affairs, allowed patients and their delegates to view and download content in their e...

Background: High-quality communication is a key determinant and facilitator of patient-centered care. Nurses engage in most of the communication with patients and patients' families in the intensive care unit. Objective: To perform a qualitative analysis of nurses' communications. Methods: Ethnographic observations of 315 hours of interactions...

We conducted a prospective study in the ICU of life-sustaining treatment and comfort care decisions over time in patients with end-stage liver disease (ESLD) from the perspectives of patients, family members, and healthcare professionals. Six patients with ESLD, 19 family members, and 122 professionals participated. The overarching theme describing...

Return of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders-institutional review board (IRB) professionals-has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue. In-depth in...

Examination of families represents an important priority in health research. In this paper we report on individual and family-level factors associated with enrollment in a cancer prevention research project. We approached families affected by melanoma for possible participation in a randomized controlled trial of a web-based communication and suppo...

Traditional expectations of the single attending physician who manages a patient's care do not apply in today's intensive care units (ICUs). Although many physicians and other professionals have adapted to the complexity of multiple attendings, ICU patients and families often expect the traditional, single physician model, particularly at the time...

Current approaches to genetic screening include newborn screening to identify infants who would benefit from early treatment, reproductive genetic screening to assist reproductive decision making, and family history assessment to identify individuals who would benefit from additional prevention measures. Although the traditional goal of screening i...

Personal attributions for cancer risk involve factors that individuals believe contribute to their risk for developing cancer. Understanding personal risk attributions for melanoma may dictate gene-environment melanoma risk communication strategies. We examined attributions for melanoma risk in a population-based sample of melanoma survivors, first...

The family provides an important communication nexus for information and support exchange about family cancer history, and adoption of family-wide cancer risk reduction strategies. The goals of this study were to (1) use the family systems theory to identify characteristics of this sample of families at increased risk of developing melanoma and (2)...

Aims: The purpose of the study was to describe the longitudinal process during which decisions are made about withholding or withdrawing life-sustaining treatment (LST) and comfort care for patients with end-stage liver disease (ESLD) in the intensive care unit (ICU). Methods: This prospective, longitudinal multiple case study was guided by the D...

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The clinical utility of genetic tests is determined by the outcomes following test use. Like other measures of value, it is often contested. Stakeholders may have different views about benefits and risks and about the importance of social versus health outcomes. They also commonly disagree about the evidence needed to determine whether a test is ef...

To assess primary care providers' communication about breast cancer risk. We evaluated 86 primary care providers' communication of risk using unannounced standardized (simulated) patients. Physicians were randomly assigned to receive one of three cases: (1) moderate risk case (n = 25), presenting with a breast lump and mother with postmenopausal br...

The nature of qualitative research in the intensive care unit (ICU) raises ethical questions not only about how we behave as researchers and nurses, but also as individuals confronted with the critical illness of others. This paper addresses unique ethical challenges our research team encountered while conducting a qualitative prospective longitudi...

Family history is increasingly important in primary care as a means to detect candidates for genetic testing or tailored prevention programs. We evaluated primary care physicians' skills in assessing family history for breast cancer risk, using unannounced standardized patient (SP) visits to 86 general internists and family medicine practitioners i...

Dr. Press discussed behavioral genetics through the lens of social constructionism. She also discussed the phenomenon of medicalization, focusing on the example of smoking as a behavior. To watch Dr. Press's presentation, please see the "Google Video posting":http://video.google.com/videoplay?docid=522910112497476586&hl=en.

OBJECTIVES: The U.S. Office of Management and Budget (OMB) guidelines for collecting and reporting race and ethnicity information recently divided the "Asian or Pacific Islander" category into "Asian" and "Native Hawaiian or Other Pacific Islander". The OMB's decision to disaggregate the "Asian or Pacific Islander" category was the first step towar...

Given the recent sequencing of the human genome, genetic susceptibility information will probably be increasingly useful in the prevention and control of many common diseases, including cancer. Although much is known about psychosocial factors related to the impact of cancer genetic testing among high-risk families in specialized clinic settings, m...

Genetic information is used increasingly in health care. Some experts have argued that genetic information is qualitatively different from other medical information and, therefore, raises unique social issues. This view, called "genetic exceptionalism," has importantly influenced recent policy efforts. Others have argued that genetic information is...

About 2% of all colorectal cancer occurs in the context of the autosomal dominantly inherited Lynch syndrome, which is due to mutations in mismatch repair genes. Potential risk-reducing interventions are recommended for individuals known to have these mutations. To review cancer risks and data on screening efficacy in the context of Lynch syndrome...

Genetic research is rapidly increasing the opportunities for the detection of inherited cancer risk. Clinicians and policy makers must ensure the adequate evaluation of the benefits and harms of this new area of practice, address the challenges of family-based detection of individuals at risk and develop practice guidelines and educational strategi...

Cancer genetics is creating new practice opportunities in medical genetics, oncology, and primary care. The ethical and counseling challenges of this new area of practice are not unique but sometimes take new form in the context of genetic risk. This article uses cases to explore the issues associated with shared family risk, including competing co...

The goal of this study was to determine whether genetic counseling or psychosocial group counseling provided to Ashkenazi women can reduce breast cancer worry, cancer risk perception, and interest in having genetic testing. Women (N = 211) were randomized to receive individual genetic risk counseling, to receive a group psychosocial group counselin...

We queried 101,951 white, Hispanic, black, Asian, American Indian (i.e., American Indian or Alaska Native in the United States and North American Indian, Metis, or Inuit in Canada) and Pacific Islander (including Native Hawaiian) adults who agreed to be genotypically and phenotypically screened for hemochromatosis as part of the Hemochromatosis and...

The goal of this study was to determine whether genetic counseling or psychosocial group counseling provided to Ashkenazi women can reduce breast cancer worry, cancer risk perception, and interest in having genetic testing. Women (N = 211) were randomized to receive individual genetic risk counseling, to receive a group psychosocial group counselin...

Genetic screening can enable timely detection and treatment of hereditary hemochromatosis (HH). Little is known about patient acceptability of DNA testing as compared to conventional phenotypic testing. Within the HEIRS Study, a large primary-care screening study of HH and iron overload, we randomly assigned participants to receive brief informatio...

While data are accumulating on the efficacy of prophylactic mastectomy as a means to reduce breast cancer risk in high risk women, the effectiveness of the procedure depends on women's interest in undergoing the procedure. We report on women's responses to this surgical option as a prevention tool. Data derive from a multi-method study of women's i...

One technique used by many investigators is to interview the same participant multiple times. This allows the researcher to observe processes unfold over time as themes lose or gain in importance; to “test” predictions made in one interview (e.g. my husband will not support my decision to not have prenatal testing) against what has actually occurre...

Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the...

In 1997, the Oregon Death with Dignity Act was enacted, allowing physicians to prescribe lethal dosages of medication to competent, terminally ill patients who request them. To improve our understanding of physicians' reactions to requests for assisted suicide, we performed semistructured interviews of 35 Oregon physicians who had received requests...

The present study reports on the important issue of how family communication and support regarding breast cancer risk affects interest in genetic testing and mental health. Participants (n = 221) were women aged 18-74 who had at least one relative of Ashkenazi Jewish descent, no personal history of breast or ovarian cancer, and lived within 60 mile...

In 1997, the Oregon Death with Dignity Act was enacted, allowing a physician to prescribe a lethal dose of medication for a competent, terminally ill patient who requests one. In 2000, we conducted single, semistructured, in-depth, face-to-face interviews with 35 Oregon physicians who received a request for a lethal prescription. The interviews foc...

Family history of chronic disease is rapidly becoming a research tool for targeting participants at increased risk. Its current usefulness in clinical practice remains unknown. This paper details the possible utility and complications in using family history in a primary care setting, using colorectal cancer risk as the health issue. Where availabl...

The HEIRS Study will evaluate the prevalence, genetic and environmental determinants, and potential clinical, personal, and societal impact of hemochromatosis and iron overload in a multiethnic, primary care-based sample of 100,000 adults over a 5-year period. Participants are recruited from 5 Field Centers. Laboratory testing and data management a...

Journal of Health Politics, Policy and Law 27.6 (2002) 1052-1056 Experiencing the New Genetics is an interesting, provocative, data-rich, ambitious, and ultimately frustrating book. Kaja Finkler's central thesis is that kinship has become medicalized by the new genetics. To support this view she makes the interesting choice of interviewing not only...

Growing knowledge about gene-disease associations will lead to new opportunities for genetic testing. Many experts predict that genetic testing will become increasingly important as a guide to prevention, clinical management, and drug treatment based on genetic susceptibilities. As part of a Human Genetic Epidemiology workshop convened by the Cente...

The Genetics in Primary Care (GPC) project is a USA national faculty development initiative with the goal of enhancing the training of medical students and primary care residents by developing primary care faculty expertise in genetics. Educational strategies were developed for the project by an executive committee with input from an advisory commi...

Genetic counseling has been suggested as a means of providing information and support to women with a family history of breast cancer. Yet women who undergo cancer genetic counseling in the United States generally consist of only a subset of those at risk, namely well-educated, upper-middle class, European American and Jewish women. We report outco...

We report on results of an interview study assessing women's attitudes toward and hypothetical interest in genetic susceptibility testing for breast cancer. Data are from 246 interviews with women of varying ethnicity (African American, European American, Native American, and Ashkenazi Jewish), family history of breast cancer (negative, positive, a...

Women commonly misunderstand their risk for breast cancer, overestimating both their risk for developing the disease at a young age and their lifetime risk. To determine whether age bias occurs in popular media coverage of breast cancer. SELECTION STRATEGY: The search term breast cancer was used to identify 389 articles in U.S. magazines with a cir...

We report on results of an interview study assessing women's attitudes toward and hypothetical interest in genetic susceptibility testing for breast cancer. Data are from 246 interviews with women of varying ethnicity (African American, European American, Native American, and Ashkenazi Jewish), family history of breast cancer (negative, positive, a...

Practice standards in medical genetics provide an implicit guide to the ethical, legal, and social implications (ELSI) of genetic tests. The common use of nondirective counseling reflects the principle that many testing decisions should be determined by personal values. Yet geneticists make test recommendations in some circumstances, e.g., RET muta...

This chapter begins with a discussion of the barriers to adequate informed consent. It then presents examples that show how public health and genetics might come together, either in research or in clinical programs. The examples cover prenatal genetic screening, newborn screening programs, and the ways in which all genetics research inevitably invo...

The purpose of this article is to provide a critical examination of two aspects of culture and biomedicine that have helped to shape the meaning and practice of genetic testing for breast cancer. These are: (1) the cultural construction of fear of breast cancer, which has been fuelled in part by (2) the predominance of a 'risk' paradigm in contempo...

Most research on prenatal fetal testing in general, and maternal alpha-fetoprotein (AFP) screening in particular, has focused on women who accept and even actively seek prenatal diagnosis. Much of this work suggests that agreeing to prenatal diagnosis is inextricably linked to the processes associated with the 'medicalization' of reproduction and t...

Carrier screening for cystic fibrosis as part of reproductive health care, including prenatal care, is not the standard of practice at this time. However, a recent National Institutes of Health Consensus Development Conference recommended that cystic fibrosis carrier screening should be offered to adults with a family history of cystic fibrosis, pa...

This paper presents data from the California maternal serum alpha fetoprotein (MSAFP) program in order to explore the effect and interaction of various factors, especially ethnicity, abortion history and attitudes, religion, and religiosity on MSAFP test decision. The intent is to describe which women are more likely to reject MSAFP screening and a...

This paper presents data from the California maternal serum alpha fetoprotein (MSAFP) program in order to explore the effect and interaction of various factors, especially ethnicity, abortion history and attitudes, religion, and religiosity on MSAFP test decision. The intent is to describe which women are more likely to reject MSAFP screening and a...

Hereditary hemochromatosis (HH) is a common autosomal recessive disorder that can result in iron overload and a wide range of clinical complications, including hepatic cirrhosis, diabetes mellitus, hypopituitarism, hypogonadism, arthritis, and cardiomyopathy. People with HH can be detected at an asymptomatic stage of the disease by abnormalities in...

Objective.— To evaluate the role of genetic testing in screening for hereditary hemochromatosis to help guide clinicians, policymakers, and researchers.Participants.— An expert panel was convened on March 3, 1997, by the Centers for Disease Control and Prevention (CDC) and the National Human Genome Research Institute (NHGRI), with expertise in ep...

Despite considerable concern of bioethicists, disabilities rights activists, feminists and others about the spread of prenatal diagnostic technologies, their routine acceptance in many parts of the world continues at a rapid pace. Yet, there is wide variation by country and region in rates of acceptance of prenatal diagnosis. We draw on John McKinl...

As new information emerges about breast carcinoma genetics, methods to integrate this information into routine clinical practice are needed. The small proportion of breast carcinoma cases due to inherited mutations must be taken into account, as well as the possibility that overemphasis on genetic risk may exacerbate breast carcinoma worries for ma...

To provide guidance on informed consent to clinicians offering cancer susceptibility testing. The Task Force on Informed Consent is part of the Cancer Genetics Studies Consortium (CGSC), whose members were recipients of National Institutes of Health grants to assess the implications of cancer susceptibility testing. The 10 task force members repres...

Using Jordan's concept of authoritative knowledge, this article describes some of the ways that the prenatal care practices of a group of U.S. women help to consolidate biomedical hegemony. We analyze the considerations that the women took into account when deciding whether or not to accept specific prenatal care recommendations as authoritative, f...

Prenatal screening for genetic disease and developmental disabilities is rapidly becoming a routine part of the management of low-risk pregnancies. Yet research on how to best inform pregnant women about these tests and their special ethical entailments remains sparse. We asked 130 low-risk pregnant women of diverse ethnic and social class backgrou...

Why is informed consent required for prenatal testing? Consent is routinely sought, but examination of the theory behind and the implementation of informed consent for prenatal testing suggests that we need to reconceptualize both the risks and the responsibilities involved in offering and accepting such prenatal tests.

We analyzed the decisions of an ethnically and socioeconomically diverse group of women to accept or refuse a prenatal diagnostic test. We found that how women were informed about the test and the kind of information they were given determined their decisions more than their ethnic or social class background. To explain this, we argue that the wome...