The emergence of an ethical duty to disclose genetic research results: international perspectives

Knoppers, Bartha Maria; Joly, Yann; Simard, Jacques; Durocher, Francine

doi:10.1038/sj.ejhg.5201690

Cited by 242 publications

(238 citation statements)

References 12 publications

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“…The earlier debate arrived at various conclusions about checking analytic validity, clinical validity and clinical utility, the right not to know and the disclosure of results that are clinically significant and actionable. 1,35,36 This has informed the IFs debate, for example that IFs that are clinically significant and actionable will be disclosed. However, there are two key differences between research results and IFs, which argue that the two be considered separately.…”

Section: Clinical Care and Researchmentioning

confidence: 99%

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

2012

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Any test that produces visual images or digital or genetic sequences will tend to produce incidental findings because more will be visible than what was originally sought. We conducted a systematic review of the ethical reasons presented in the literature for and against the disclosure of incidental findings arising in clinical and research genetics contexts. A search of electronic databases resulted in 13 articles included for systematic review. Articles presented reasons for and against disclosure, and reasons for proceeding with caution when making decisions about disclosure. One major recommendation of the reviewed articles is in favor of qualified disclosure: incidental findings with confirmed clinical utility where there is the possibility of treatment or prevention should be disclosed, with exceptions. A second type of recommendation is that disclosure should proceed with caution, especially in the context of new genetic technologies and genetic testing involving minors. It is also recommended that the number of possible incidental findings be limited even before genetic testing is carried out. Such a policy, which we advocate, would show preference for non-disclosure.

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Section: Clinical Care and Researchmentioning

confidence: 99%

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

2012

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“…This obligation encompasses both the suggestion that researchers should make the aggregate results of research available to research participants, 8 and more controversially, that researchers should disclose research results to the individuals for whom the results are individually relevant. 9,10 Debate centers around the moral motivation for such an obligation, and what kinds of findings would trigger it. Proponents argue that the obligation is supported by specific ethical principles, and is widely desired by participants.…”

Section: Introductionmentioning

confidence: 99%

What is a meaningful result? Disclosing the results of genomic research in autism to research participants

2010

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Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether -and which results -to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results 'reportable' when results were perceived to explain cause, and answer the question 'why;' that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed 'true.' Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as 'true' depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is 'genetic.' For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.

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“…Various guidelines have emerged during the past decade implying an obligation for researchers to return results. 11,12 As Miller et al 13 have pointed out, a considerable amount of confusion exists concerning the extent and character of this putative duty.…”

Section: Introductionmentioning

confidence: 99%

Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results

2009

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During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.

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The emergence of an ethical duty to disclose genetic research results: international perspectives

Cited by 242 publications

References 12 publications

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

To tell or not to tell? A systematic review of ethical reflections on incidental findings arising in genetics contexts

What is a meaningful result? Disclosing the results of genomic research in autism to research participants

Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results

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