Evolving approaches to the ethical management of genomic data

McEwen, Jean; Boyer, Joy T; Sun, Kathie

doi:10.1016/j.tig.2013.02.001

Cited by 50 publications

(43 citation statements)

References 89 publications

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“…Interestingly, there was little evidence of fear of results or implications for insurance, employment or privacy being a potential barrier to participation in genomics research: only one person stated that their reason for being unwilling to participate in genomics research was that they would be "scared to know," and only one person's reason for being unwilling appeared to be linked to concern about the potential for loss of privacy, saying "once information is out, it goes out all over." We speculate that this may perhaps be due to low awareness of the possible implications for insurance and employment (Dorsey et al 2012), low relevance of these issues given the low income of many of these patients, or low awareness of the current evidence indicating the inherent impossibility of guaranteeing privacy of personal genomic information once donated to genomics research (McEwen et al 2013;Gymrek et al 2013). Alternatively, it could reflect a genuine lack of fear or concern regarding these issues.…”

Section: Discussionmentioning

confidence: 94%

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

et al. 2013

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Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including openended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p<0.001). Participants were Community Genet (2013) 4:469-482 DOI 10.1007 more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p<0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly lowincome, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.

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Section: Discussionmentioning

confidence: 94%

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

et al. 2013

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“…Additional suggestions on guidelines that should be followed in genome studies are given in the studies of Choudhury and Knapp (2006), Vitti et al (2012), andMcEwen et al (2013).…”

Section: Ethical Principlesmentioning

confidence: 99%

Bioethics, population studies, and geneticophobia

Salzano

2015

J Community Genet

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In any research of human populations, the classical principles of bioethics (respect for autonomy, non-maleficence, beneficence, proportionality between risks and benefits, and justice) should be strictly followed. The question of individual and/or community rights should also be considered, as well as some neglected rights, such as the right to benefit from progress in science and technology and the right to know the nature of the group's biological and cultural history; however, in their urge to assure rights, social researchers, bioethics commissions, non-governmental organizations, and community leaders are, in many cases, crossing the limits of good sense. DNA is sometimes interpreted as synonymous to demoniac, and there is a frequent behaviour that I could only describe using a neologism: geneticophobia. There is an irrational attitude against genetic studies aiming to unravel the biological history of a given people and to classify any genome population study as "racist". This behaviour should be opposed; science and the scientific study of humankind are the only way we have to reach the socially adequate objective of the maximum of happiness to the largest number of persons.

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“…In turn, new opportunities for drug discovery and other scientific investigations built on these associations are forged. Both a scientific and utilitarian defense can be made to support the expansion of biomarker research considering the collaborative nature of genomics [19,20] and the necessary volume of sequence data needed [21].…”

Section: Voluntariness Vs Public Goodmentioning

confidence: 99%

Phasing Out Voluntary Donation in Clinical Trials: The Ethics of Mandating Biospecimen Collection

Rahimzadeh¹

2015

J Clin Trials

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Biomarker studies are one of the primary research vehicles for gathering necessary genotypic evidence in the search for genetic etiologies of disease. Until recently, samples used for biomarker studies were almost exclusively collected from participants donating to bio-banks or dedicated genome-wide association studies. Based on observations while serving on a research ethics board in Canada, it has become commonplace for clinical trial sponsors to mandate that participants provide tissue and other DNA samples as a condition for their participation in the trial. This viewpoint argues that imposing such a condition runs counter to the premise of voluntariness upon which bio-bank donation specifically, and biomedical research generally has historically rested. Public apprehension regarding data protection and fear of genetic discrimination can accentuate the ethical dubiousness of mandating bio-specimen collection.

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Evolving approaches to the ethical management of genomic data

Cited by 50 publications

References 89 publications

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

Bioethics, population studies, and geneticophobia

Phasing Out Voluntary Donation in Clinical Trials: The Ethics of Mandating Biospecimen Collection

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