Misdirected precaution

Prainsack, Barbara; Reardon, Jenny; Hindmarsh, Richard Alan; Gottweis, Herbert; Naue, Ursula; Lunshof, Jeantine E.

doi:10.1038/456034a

Cited by 97 publications

(60 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Some of these tests are available for use in clinical practice, but for some, including the susceptibility tests for psychiatric disorders, there are few published data thus far to support clinical validity. 4 A gene-disease susceptibility association that has been replicated by a large number of studies is an interaction between a functional polymorphism in the promoter region (5-HTTLPR) of the serotonin transporter gene (SCL6A4) and exposure to stressful life events in increasing the likelihood of a major depression in non-clinical populations of adults, 5-8 adolescents 9 and children. 10 The evidence suggests that individuals homozygous for the short allele (s/s) of the serotonin transporter gene-linked polymorphic region may be at an increased risk for depression on exposure to multiple stressful life events.…”

Section: Introductionmentioning

confidence: 99%

Public interest in predictive genetic testing, including direct-to-consumer testing, for susceptibility to major depression: preliminary findings

et al. 2009

View full text Add to dashboard Cite

The past decade has seen rapid advances in the identification of associations between candidate genes and a range of common multifactorial disorders. This paper evaluates public attitudes towards the complexity of genetic risk prediction in psychiatry involving susceptibility genes, uncertain penetrance and gene-environment interactions on which successful molecular-based mental health interventions will depend. A qualitative approach was taken to enable the exploration of the views of the public. Four structured focus groups were conducted with a total of 36 participants. The majority of participants indicated interest in having a genetic test for susceptibility to major depression, if it was available. Having a family history of mental illness was cited as a major reason. After discussion of perceived positive and negative implications of predictive genetic testing, nine of 24 participants initially interested in having such a test changed their mind. Fear of genetic discrimination and privacy issues predominantly influenced change of attitude. All participants still interested in having a predictive genetic test for risk for depression reported they would only do so through trusted medical professionals. Participants were unanimously against direct-to-consumer genetic testing marketed through the Internet, although some would consider it if there was suitable protection against discrimination. The study highlights the importance of general practitioner and public education about psychiatric genetics, and the availability of appropriate treatment and support services prior to implementation of future predictive genetic testing services.

show abstract

Section: Introductionmentioning

confidence: 99%

Public interest in predictive genetic testing, including direct-to-consumer testing, for susceptibility to major depression: preliminary findings

et al. 2009

View full text Add to dashboard Cite

show abstract

“…Keeping channels of communication open throughout the life of the project is clearly essential if satisfactorily informed consent is to be achieved. 16,50 Finally, our research highlights the importance of the community, alongside the individual, in this type of research. Linking genealogical, health and genetic data in a small, isolated community provides researchers with information not just about individual participants but also about the whole biological group -participants and nonparticipants alike.…”

Section: Discussionmentioning

confidence: 99%

Comparison of participant information and informed consent forms of five European studies in genetic isolated populations

et al. 2009

View full text Add to dashboard Cite

on behalf of the EUROSPAN consortiumFamily-based research in genetically isolated populations is an effective approach for identifying loci influencing variation in disease traits. In common with all studies in humans, those in genetically isolated populations need ethical approval; however, existing ethical frameworks may be inadequate to protect participant privacy and confidentiality and to address participants' information needs in such populations. Using the ethical-legal guidelines of the Council for International Organizations of Medical Sciences (CIOMS) as a template, we compared the participant information leaflets and consent forms of studies in five European genetically isolated populations to identify additional information that should be incorporated into information leaflets and consent forms to guarantee satisfactorily informed consent. We highlight the additional information that participants require on the research purpose and the reasons why their population was chosen; on the potential risks and benefits of participation; on the opportunities for benefit sharing; on privacy; on the withdrawal of consent and on the disclosure of genetic data. This research raises some important issues that should be addressed properly and identifies relevant types of information that should be incorporated into information leaflets for this type of study.

show abstract

“…Preliminary findings suggest that the perception of one's risk influences the behavioral decisions, including sharing results with health-care providers. 23 The CPMC has a unique study design with a focus on education, ethical conduct, and scientific validity; the journal Nature described the study as "leading by example, " 24 and MIT Technology Review placed the CPMC on its 2010 "Top 10 Research Projects to Watch" list. 25 The ICOB model seen in practice through the CPMC research study is becoming an example of trusted best practice to concurrently recruit subjects and build large cohorts from which to study longitudinally.…”

Section: Discussionmentioning

confidence: 99%