Concern about Justifying the Release of Genomic Data as a Civil Right

Dreyfus, Jennifer C.; Sobel, Mark E.

doi:10.1016/j.ajhg.2018.06.003

Cited by 4 publications

(2 citation statements)

References 2 publications

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“…Interviewees had varied opinions on the return of individual results, suggesting that a "one size fits all" approach would not be appropriate (Stein et al, 2019;Vos et al, 2017). Investigators with a positive attitude toward the return of genetic results argued that only validated clinically significant individual results should be returned to the research participants (Dreyfus & Sobel, 2018;Seidman et al, 2017). However, these results have to be clinically validated by a certified/accredited laboratory (H3Africa, 2018;Holm et al, 2014) and require scientists with the capacity to accurately analyze and interpret them.…”

Section: Discussionmentioning

confidence: 99%

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

et al. 2021

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Genetic results are usually not returned to research participants in Uganda despite their increased demand. We report on researchers' perceptions and experiences of return of individual genetic research results. The study involved 15 in-depth interviews of investigators involved in genetics and/or genomic research. A thematic approach was used to interpret the results. The four themes that emerged from the data were the need for return of individual results including incidental findings, community engagement and the consenting process, implications and challenges to return of individual results. While researchers are willing to return clinically significant genetic results to research participants, they remain unsure of how this should be implemented. Suggestions to aid implementation of return of results included reconsenting of participants before receiving individual genetic results and increasing access to genetic counseling services. Community engagement to determine community perceptions and individual preferences for the return of results, and also prepare participants to safely receive results emerged as another way to support return of results. Researchers have a positive attitude toward the return of clinically significant genetic results to research participants. There is need to develop national guidance on genetic research and also build capacity for clinical genetics and genetic counseling.

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Section: Discussionmentioning

confidence: 99%

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

et al. 2021

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“…Negative perception of data sharing among researchers also leads to sporadic implementation of the practices (Mueller-Langer and Andreoli-Versbach 2018). Except for researchers from a few selected disciplines such as genomics, who are receptive of and have embraced data sharing, many scholars from other fields attach negative views to data sharing and are not ready to share their data with others (Dreyfus and Sobel 2018;Elliott 2016;Madas and Schofield 2019;Mueller-Langer and Andreoli-Versbach 2018;Ross, Iguchi and Panicker 2018).…”

Section: Introductionmentioning

confidence: 99%

Perceptions towards research data sharing: A qualitative study of Nigerian academics

Abdullah

Noorhidawati

2020

MJLIS

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Open science provides transparency to research processes by means of open data as data sharing initiates. The need for data sharing among scholars and researchers was evident, the uptake however is slow due to the benefits and detriments of the practices. This paper explores the perceptions of Nigerian academics towards research data sharing practices. Participants from five universities in Nigeria were purposively sampled. Data were gathered through interviews with 22 participants. Their perception towards data sharing was reflected through their awareness, understanding and familiarity of the practice. Most of the participants perceived that data sharing would add value to their professional reputation and fast-track their research progression, however a few of them perceived data sharing as disquieting. The academics labelled data privacy and cultural orientation to be those risks associated with data sharing. The study provides deeper understanding of data sharing and the opportunity for academics to know diverse insights of data sharing practices that would guide scholars in intensifying a variety of data management services, which then can be personalized to their exclusive needs. Further investigation could be done through quantitative research approach to inform data sharing behavior in a larger scale in order to improve the current practices.

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Response to Dreyfus and Sobel

Evans

2018

The American Journal of Human Genetics

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They framed the debate aptly-as a debate about civil rights-and made an effort to provide legal support for their position. Bioethical discourse has been largely silent about civil rights, even though bioethicists are keenly attentive to civil-rights-related issues such as privacy, discrimination, stigmatization, and the need to be informed when consenting to uses of one's data. 2 A vibrant, legally grounded debate about genomic civil rights is overdue, and I thank the American Journal of Human Genetics for hosting it.

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Concern about Justifying the Release of Genomic Data as a Civil Right

Abstract: (2017). Federal policy for the protection of human subjects. Final rule. Fed. Regist. 82, 7149-7274.

Cited by 4 publications

References 2 publications

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

Researchers’ perspectives on return of individual genetics results to research participants: a qualitative study

Perceptions towards research data sharing: A qualitative study of Nigerian academics

Response to Dreyfus and Sobel

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