The Return of Results of Deceased Research Participants

Tassé, Anne Marie

doi:10.1111/j.1748-720x.2011.00629.x

Cited by 21 publications

(13 citation statements)

References 6 publications

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“…1 Despite this lack of clarity, the discussion has moved to the offer of research results to family members of participants, including when the participant is deceased. 2 Given the familial implications of genetic information, this extension is perhaps logical. But it raises concerns throughout the research process, including, for example, questions about disclosures and choices on consent forms, procedures for identifying and contacting family members, and how any such obligations might apply to secondary users of biospecimens and data.…”

Section: Introductionmentioning

confidence: 99%

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Beskow¹,

O’Rourke²

2015

J. Law. Med. Ethics

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Whether or not to offer individual genetic results to research participants has been the subject of considerable debate, yet consensus regarding what, when, and how to return remains elusive. Despite this lack of clarity, the discussion has moved to the offer of research results to family members of participants, including when the participant is deceased. Given the familial implications of genetic information, this extension is perhaps logical. But it raises concerns throughout the research process, including, for example, questions about disclosures and choices on consent forms, procedures for identifying and contacting family members, and how any such obligations might apply to secondary users of biospecimens and data.

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Section: Introductionmentioning

confidence: 99%

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Beskow¹,

O’Rourke²

2015

J. Law. Med. Ethics

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“…The sensitive nature of genetic information, the time elapsed since death, the expressed wishes of the deceased to disclose the results (or not), the family members' wishes to receive them (or not), and the relevance of the results for the health of living relatives must all be considered (Tassé 2011;Bredenoord 2012;Chan et al 2012;Boers 2015).…”

Section: Family Members Of Deceased Individualsmentioning

confidence: 99%

“…Regarding the disclosure of research results, a consensus seems to emerge from the literature (Tassé 2011;Bredenoord 2012;Boers 2015) and guidelines, that genetic research results from a deceased participant could be returned to family members if (RMGA 2016) 1) they meet generally accepted criteria of scientific and clinical validity; 2) they have significant implications for family members; 3) the participant has previously consented that they be transmitted to family members; 4) REB approval has been obtained; 5) the family (i.e., the persons directly affected by the results) have consented; and 6) the research result has been confirmed.…”

Section: Family Members Of Deceased Individualsmentioning

confidence: 99%

Next-Generation Sequencing and the Return of Results

Knoppers

Nguyen

Sénécal

et al. 2016

Cold Spring Harb Perspect Med

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The impact of next-generation sequencing (NGS) on the issue of return of results is defying clear policy guidance and creating international confusion. Limiting ourselves to the return of results revealed by NGS (including incidental findings) in adults, children, family members of deceased individuals, and population studies, we describe and contrast emerging policy positions in Europe, Canada, and the United States. Until there are clear, scientific, and professional standards and practical policy, both researchers and clinicians cannot be faulted for being either hesitant or pressured to return NGS results.

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“…One may consider genetic information belonging to the family, especially after the death of a patient, however the laws surrounding privacy change over time and are by no means consistent across different jurisdictions 32 . There is a fine balance between respecting the privacy and wishes of the deceased versus the health interests and needs of the family.…”

Section: Family Implicationsmentioning

confidence: 99%

Confidentiality & the Risk of Genetic Discrimination

Gammon

Neklason

2015

Surgical Oncology Clinics of North America

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In the past decade, federal and state laws have been passed to provide legal protections against genetic discrimination as it pertains to employment, health coverage and rates. Much of the public and a notable portion of medical providers are not aware of the legislation surrounding genetic discrimination and unnecessary concerns about genetic privacy can get in the way of opportunities to deliver the optimal medical care. Patient health information including genetic testing and family history are protected under Health Insurance Portability and Accountability Act (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). Additional protections are afforded through the American with Disabilities Act, state laws, and the Affordable Care Act. Communicating a genetic test result back to a patient is important for medical management decisions. Physicians also have a duty to warn patients of genetic findings and that the patient’s relatives are at risk from a genetically transferable condition. Medical care providers cannot, however, inform relatives in the absence of patient permission. Because management of a patient with a positive genetic test extends to the family members, it is important to empower and provide the tools for the patient to communicate with relatives. A discussion of family implications includes benefits and challenges to the larger family, maintaining confidentiality in light of sharing information with family members, and disclosure of result if patient dies. Emerging issues include the use of whole genome sequencing for both germline and tumor DNA and confidentiality in the era of social media.

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The Return of Results of Deceased Research Participants

Cited by 21 publications

References 6 publications

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles

Next-Generation Sequencing and the Return of Results

Confidentiality & the Risk of Genetic Discrimination

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