Eric Vermeulen

VU University Medical Center, Amsterdam, North Holland, Netherlands

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Publications (15)67.33 Total impact

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    ABSTRACT: Genetic testing and family history assessment can be used as an aid in the prevention of common chronic diseases. The aim of this study was to determine public attitudes and interests towards offering genetic testing and family history-based risk assessment for common chronic disease prevention. Cross-sectional questionnaire survey of a consumer panel representative for the Dutch population. The questionnaire was sent to 1399 panel members, aged ≥18 years. The response was 70% (978/1399). About half of the respondents expressed an interest in genetic testing to prevent specific diseases (cancer, cardiovascular disease, diabetes or dementia), with lower-educated respondents showing more interest than higher-educated respondents. Few respondents (24%) agreed that people should be preventively tested for all kinds of diseases. According to the respondents, genetic testing should be performed in the hospital (66%) and be directed to curable (57%) or preventable diseases (69%). Half of the respondents believed that family history assessment could help prevent disease, but only 21% thought it should be offered to everyone, as this could cause people to be worried. A minority (12%) reported that their family history had been assessed, whereas 59% did not have it assessed and did not think this would be necessary. Respondents have differentiated interests in preventive genomics, which varies depending on sex, age and level of education. Members of the public are interested in genetic testing for preventable and curable diseases, but they are ambivalent about family history risk assessment to prevent disease.
    The European Journal of Public Health 09/2013; · 2.52 Impact Factor
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    ABSTRACT: Therapeutic misconception has been extensively studied and addressed within clinical trials. An equivalent in the genetic research context has been identified as diagnostic misconception. There is not much data on this phenomenon in population-based biobank studies. Since misconceptions may generate undue motives to enroll, the authors aimed at reviewing studies addressing the reasons to participate in biobank studies. The main databases were searched using relevant keywords. Studies were included if peer-reviewed, in English and describing the reasons to enroll was provided by actual and apparently healthy donors. Although the 13 studies retrieved were heterogeneous, a scheme summarizing the main aspects involved in the decision-making process was developed. Expectation of personal benefit through health-related information was found in eight studies. Three of them discussed whether this expectation could be considered a form of therapeutic misconception. The magnitude of this phenomenon is an important ethical concern and ought to be further studied.
    Expert Review of Molecular Diagnostics 01/2013; 13(1):35-47. · 4.09 Impact Factor
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    ABSTRACT: Ten years after the Human Genome Project, medicine is still waiting for many of the promised benefits, and experts have tempered their high expectations. Public opinion on genetic testing has generally been favourable but is this still the case? The aim of this study is to compare public experiences, beliefs and expectations concerning genetic testing over the years (2002 vs 2010). A cross-sectional questionnaire survey was conducted using the Dutch Health Care Consumer Panel in 2002 and 2010. Responses to questions in identical wording were compared. In 2002 and 2010, 817 (63%) and 978 (70%) members responded, respectively. Awareness and reported use of genetic tests remained stable over time. In 2010, more respondents expected genetic testing to become more widely applied, believed that knowledge about the genetic background of disease helps people live longer, and that testing should be promoted more intensively. In 2010, they were also more interested in their own genetic make-up. On the one hand, the concern that a dichotomy would emerge between people with 'good genes' and 'bad genes' was higher. On the other hand, respondents thought that insurance companies would be less likely to demand a genetic test in order to calculate health insurance premiums. In conclusion, the results suggest that in 8 years, expectations of benefits and potential use of genetic testing have been raised among the public, resulting in more positive opinions. Worries on inequity remain, although worries about premium differentiation by insurance companies have decreased.European Journal of Human Genetics advance online publication, 19 December 2012; doi:10.1038/ejhg.2012.271.
    European journal of human genetics: EJHG 12/2012; · 3.56 Impact Factor
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    ABSTRACT: The participation of minors in biobank research can offer great benefits for science and health care. However, as minors are a vulnerable population they are also in need of adequate protective measures when they are enrolled in research. Research using biobanked biological samples from children poses additional ethical issues to those raised by research using adult biobanks. For example, small children have only limited capacity, if any, to understand the meaning and implications of the research and to give a documented agreement to it. Older minors are gradually acquiring this capacity. We describe principles for good practice related to the inclusion of minors in biobank research, focusing on issues related to benefits and subsidiarity, consent, proportionality and return of results. Some of these issues are currently heavily debated, and we conclude by providing principles for good practice for policy makers of biobanks, researchers and anyone involved in dealing with stored tissue samples from children. Actual implementation of the principles will vary according to different jurisdictions.European Journal of Human Genetics advance online publication, 20 June 2012; doi:10.1038/ejhg.2012.99.
    European journal of human genetics: EJHG 06/2012; · 3.56 Impact Factor
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    ABSTRACT: The arrival of new genetic technologies that allow efficient examination of the whole human genome (microarray, next-generation sequencing) will impact upon both laboratories (cytogenetic and molecular genetics in the first instance) and clinical/medical genetic services. The interpretation of analytical results in terms of their clinical relevance and the predicted health status poses a challenge to both laboratory and clinical geneticists, due to the wealth and complexity of the information obtained. There is a need to discuss how to best restructure the genetic services logistically and to determine the clinical utility of genetic testing so that patients can receive appropriate advice and genetic testing. To weigh up the questions and challenges of the new genetic technologies, the European Society of Human Genetics (ESHG) held a series of workshops on 10 June 2010 in Gothenburg. This was part of an ESHG satellite symposium on the ‘Changing landscape of genetic testing’, co-organized by the ESHG Genetic Services Quality and Public and Professional Policy Committees. The audience consisted of a mix of geneticists, ethicists, social scientists and lawyers. In this paper, we summarize the discussions during the workshops and present some of the identified ways forward to improve and adapt the genetic services so that patients receive accurate and relevant information. This paper covers ethics, clinical utility, primary care, genetic services and the blurring boundaries between healthcare and research.
    European Journal of HumanGenetics 03/2012; 20(9):911-916. · 4.32 Impact Factor
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    ABSTRACT: The objective of this article is to explore the views of Dutch cancer patients on the use of excised and stored (tumor) tissues in medical research. Excised tissues are routinely stored in hospitals for future diagnostic use. They are also important for scientific research. This article discusses and interprets concepts of ‘ownership’ in the context of the increasing scientific and commercial value of tissues. We used a mixed-methods design combining quantitative data (questionnaires) with qualitative data (interviews) and observations during an intervention study. Our analysis suggests that, for patients, the stored tissue is a hypercollective good that should remain in the public sphere in order to facilitate research. The tissue is seen as connecting the donor to relatives and other patients, the hospital, and to the larger scientific community. The respondents expressed a preference for an ongoing relationship with the tissue custodian. A substantial minority of respondents consider themselves to be owners of the tissue. Notably, tumour tissue is perceived as unique and special. Patients endorse the use of extracorporeal tissue removed during medical care in scientific research. They expect reciprocity from the tissue custodian in the form of information about findings.
    BioSocieties 12/2011; 6(4). · 1.26 Impact Factor
  • Nature Reviews Cancer 11/2011; 11(12):895; author reply 895. · 29.54 Impact Factor
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    Amade M'charek, Suzanne Thijsse, Eric Vermeulen
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    ABSTRACT: De overheid en burgers hechten steeds meer waarde aan preventie. De markt is ingesprongen op dit verlangen. Zo bieden bedrijven net over de grens in Duitsland de in Nederland vergunningsplichtige en de facto verboden Total Body Scans aan. Nederlandse artsen zijn sceptisch over de kwaliteit en het nut van dit soort onderzoeken. In deze beschouwing bespreken we een onderzoek naar de ervaringen en opvattingen van mensen die een preventieve Total Body Scan laten verrichten. Vervolgens gaan we in op de vraag of het PreventieConsult (gebaseerd op een korte vragenlijst) dat in huisartspraktijken wordt aangeboden, kan aansluiten bij de wensen van consumenten die veel waarde hechten aan door middel van medische technieken verkregen gegevens. _______________________ Seeing is believing Prevention is highly valued by both governments and civilians. Market parties have developed initiatives to accommodate this demand. Companies offer in the Netherlands prohibited Total Body Scans in Germany. Dutch physicians are sceptical about the quality and value of these tests. The first author has investigated the experiences and opinions of patients who had a preventive Total Body Scan. In this contribution we discuss the findings with respect to the recent attempt in the Dutch health care to prevent citizens from doing unnecessary and cost-generating tests by means of the Prevention Consult. Because consumers value outcomes that are obtained by medical techniques we question how the prevention consult can answer to the wishes of consumers.
    Tijdschrift voor Gezondheidswetenschappen. 01/2011; 89(2):85.
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    ABSTRACT: The aims of this study were to determine which consent procedure patients prefer for use of stored tissue for research purposes and what the effects of consent procedures on actual consenting behaviour are. We offered 264 cancer patients three different consent procedures: 'one-time general consent' (asked written informed consent), 'opt-out plus' (had the opportunity to opt out by a form), or the standard hospital procedure (control group). The two intervention groups received a specific leaflet about research with residual tissue and verbal information. The control group only received a general hospital leaflet including opt-out information, which is the procedure currently in use. Subsequently, all patients received a questionnaire to examine their preferences for consent procedures. In all, 99% of patients consented to research with their residual tissue. In the 'one-time consent' group 85% sent back their consent form. Patients preferred 'opt-out plus' (43%) above 'one-time consent' (34%) or 'opt-out' (16%), whereas 8% indicated that they did not need to receive information about research with residual tissues or be given the opportunity to make a choice. The 'opt-out plus' procedure, which places fewer demands on administrative resources than 'one-time consent', can also address the information needs of patients.
    British Journal of Cancer 11/2009; 101(9):1505-12. · 5.08 Impact Factor
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    ABSTRACT: In a large retrospective cohort of breast cancer patients, BRCA1 and BRCA2 germline mutations were analysed in DNA isolated from residual paraffin-embedded tissue samples. Because it was not feasible to ask individual for informed consent, a data and DNA coding protocol, based on the Dutch 'Code of Conduct', was developed. The corner stone of the protocol is that a trusted third party, in our case a notary, keeps the coding keys of clinical data and DNA. Because (re)linkage of the combined coded clinical and genotyping data (BRCA1/2) is only possible through the notary's keys, these can be considered to be comparable to anonymised data at the level of the researcher. Issues around retrospective genotyping of allegedly high-risk mutations and the coding procedure itself are discussed. Our protocol is an appropriate solution to safeguard the privacy of patients when using residual tissue or DNA of patients. Importantly, the coding procedure also allows re-linkage of new genotyping data or extended patient follow-up data to the valuable coded dataset.
    European journal of cancer (Oxford, England: 1990) 05/2009; 45(13):2376-82. · 4.12 Impact Factor
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    ABSTRACT: To obtain consent from breast cancer survivors to use residual tissue for a study on carriership of germ line mutations in the BRCA 1 and 2 genes. To investigate which consent regimen patients prefer for research with archived tissue. One hundred and thirty-two patients surgically treated for breast cancer between 1995 and 1997 in the Netherlands Cancer Institute were mailed a consent form and a questionnaire. A consent form was obtained from 90%; 3% withheld consent for the use of archived tissue. A completed questionnaire was returned by 84%. 'One-time general consent' was considered to be the best procedure for consenting to research with stored tissue by 56%, 23% favoured the current 'opt-out' procedure; 21% did not know or had no preference. Obtaining fresh consent for genetic research with stored tissue is possible at the cost of time and effort. Most patients give consent for research with residual tissue.
    European journal of cancer (Oxford, England: 1990) 03/2009; 45(7):1168-74. · 4.12 Impact Factor
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    ABSTRACT: Human tissue remaining after diagnostic procedures is important for use in scientific research. This 'secondary use' of tissue is regulated by the Dutch Medical Treatment Contracts Act and the Code of Conduct for Proper Secondary Use of Human Tissue of the Dutch Federation of Biomedical Scientific Societies. Patients have the right to opt-out of further use of their residual tissue, but the procedures for objection and the provision of information involved are not regulated by statute. Dutch patients have a positive attitude to further use of human tissue for other purposes. They prefer, however, a procedure in which they are informed verbally by their health professional about research with residual tissue. The information can be brief and is best provided early in the treatment. Administrative and technical modifications of the current registration systems are necessary to support the opting-out procedure in practice. By taking the preferences of patients into account, trust in medical practice can be maintained.
    Nederlands tijdschrift voor geneeskunde 01/2009; 153:A948.
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    ABSTRACT: The aims of this study were to determine: (1) which consent procedures patients prefer for future medical research with tissue stored following surgery; (2) the percentage of patients who choose not to provide consent for research with their stored tissue; (3) the reasons given for denying such tissue use. Patients (n = 103) from the Vrije Universiteit Medical Centre, an academic hospital in The Netherlands, who had recently undergone surgery for breast or colorectal cancer were mailed a questionnaire about preferences for consent regimens. Seventy-six patients (74%) completed the questionnaire. Only two patients (3%) chose not to provide consent for research with their stored tissue. The majority of patients (60%) preferred an "opt-out plus" procedure that included receiving active, verbal information to "one-time general consent" (11%) or to an "opt-out" procedure without verbal notification (5%). Only 3% indicated a wish to be asked for consent for each new research project and 21% did not know what they preferred or had no preference. There were no significant associations observed between preference for the various consent regimens and age, sex, educational level or personal sense of ownership of the stored tissue. Patients prefer an opt-out plus procedure that includes the provision of explicit, verbal and written information. Less than 5% of patients decline to consent to the use of their stored tissue for research purposes.
    Journal of clinical pathology 12/2008; 62(3):275-8. · 2.43 Impact Factor
  • Eric Vermeulen
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    ABSTRACT: Neonatology provides intensive care for newborns. Most of the patients in a neonatal ward have been born prematurely. In this article decision-making concerning children born very prematurely (at fewer than 28 weeks, 12 or more weeks too early) is described. Three phases of daily practice are discussed: birth, treatment and referral or death. The article is based on ethnographic research conducted in the neonatal ward of the Amsterdam University Hospital. This ward's policy is to refrain from starting life-prolonging treatment for some children. This is done when staff members consider their chances too small. When life-prolonging treatment is started it is done provisionally and with trial-like features. Staff members want to judge the acceptability of the child's future quality of life. If they think it is unacceptable, they want to stop life-prolonging treatment. Parents play an important role in decision-making because their consent is needed for such decisions. More importantly, staff members need parental input about what, for that particular child and those parents, is seen as a good, bad or acceptable quality of future life. Decision-making shows a specific characteristic. Parents are informed about their child in sober terms and because they have considerable opportunities to influence decision-making it is argued that the processes taking place in the ward reflect the Dutch 'negotiation culture'.
    Social Science [?] Medicine 12/2004; 59(10):2071-85. · 2.73 Impact Factor
  • Suzanne Thijsse, Amade M’charek, Dr. Eric Vermeulen
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    ABSTRACT: De overheid en burgers hechten steeds meer waarde aan preventie. De markt is ingesprongen op dit verlangen. Zo bieden bedrijven net over de grens in Duitsland de in Nederland vergunningsplichtige en de facto verboden Total Body Scans aan. Nederlandse artsen zijn sceptisch over de kwaliteit en het nut van dit soort onderzoeken. In deze beschouwing bespreken we een onderzoek naar de ervaringen en opvattingen van mensen die een preventieve Total Body Scan laten verrichten. Vervolgens gaan we in op de vraag of het PreventieConsult (gebaseerd op een korte vragenlijst) dat in huisartspraktijken wordt aangeboden, kan aansluiten bij de wensen van consumenten die veel waarde hechten aan door middel van medische technieken verkregen gegevens.
    Tijdschrift voor gezondheidswetenschappen. 89(2).

Publication Stats

71 Citations
67.33 Total Impact Points

Institutions

  • 2011–2013
    • VU University Medical Center
      • Section of Community Genetics
      Amsterdam, North Holland, Netherlands
  • 2008–2013
    • Netherlands Cancer Institute
      • Division of Psychosocial Research and Epidemiology
      Amsterdamo, North Holland, Netherlands
  • 2012
    • Oxford University Hospitals NHS Trust
      Oxford, England, United Kingdom
    • Institute for Health and Care Research
      Amsterdamo, North Holland, Netherlands
  • 2004
    • VU University Amsterdam
      Amsterdamo, North Holland, Netherlands