Research participants’ attitudes towards the confidentiality of genomic sequence information

Abstract

Respecting the confidentiality of personal data contributed to genomic studies is an important issue for researchers using genomic sequencing in humans. Although most studies adhere to rules of confidentiality, there are different conceptions of confidentiality and why it is important. The resulting ambiguity obscures what is at stake when making tradeoffs between data protection and other goals in research, such as transparency, reciprocity, and public benefit. Few studies have examined why participants in genomic research care about how their information is used. To explore this topic, we conducted semi-structured phone interviews with 30 participants in two National Institutes of Health research protocols using genomic sequencing. Our results show that research participants value confidentiality as a form of control over information about themselves. To the individuals we interviewed, control was valued as a safeguard against discrimination in a climate of uncertainty about future uses of individual genome data. Attitudes towards data sharing were related to the goals of research and details of participants' personal lives. Expectations of confidentiality, trust in researchers, and a desire to advance science were common reasons for willingness to share identifiable data with investigators. Nearly, all participants were comfortable sharing personal data that had been de-identified. These findings suggest that views about confidentiality and data sharing are highly nuanced and are related to the perceived benefits of joining a research study.

De-identified genomic data sharing: the research participant perspective

“…This is consistent with other studies that have found that while participants expressed concern about maintaining privacy if their personal information was added to a bio-repository, and even felt that it was inevitable their confidentiality would be breeched, the majority expressed that the benefits of pooled data outweigh the potential risks to their privacy Jamal et al 2014;Lemke et al 2010;McCarty et al 2011). Consistent with others (Trinidad et al 2010), this population expressed that while it was important that their privacy and information be protected, having their information available to many research studies is important to them.…”

“…Previous qualitative studies using focus groups ) and phone interviews (Jamal et al 2014;Lemke et al 2010) have yielded somewhat conflicting results. These studies have found that most research participants agree that the benefits of data sharing outweigh the potential risks ).…”

“…Others have shown that it is important to research participants that they feel they have control over which researchers have access and use their data (Jamal et al 2014;Lemke et al 2010). This study found that other than the original researcher, participants were most comfortable sharing their pooled data and information with other researchers at the same university and non-profit organizations, followed by researchers at other universities in the USA.…”

“…These studies have found that most research participants agree that the benefits of data sharing outweigh the potential risks ). However, they are concerned that their personal information or identity may be extracted from their genomic data (Jamal et al 2014;Lemke et al 2010) and have misgivings about sharing their data with for-profit companies or other researchers (Lemke et al 2010). Participant views on the maintenance of a link with de-identified data are not known.…”

Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review

“…Those are the only things I could think of from someone else's point of view, that the information could be used against them. For me, I don't have those sorts of issues' (PQ) [36], while the other participant said: 'It wouldn't bother me, because, for one, I know scientists aren't really, you know, looking for personal stuff (…)' (PQ) [37]. The employment status, for instance, was mentioned as a key factor in attributing importance to sensitivity of Goddard et al…”