Consent to the use of stored DNA for genetics research: A survey of attitudes in the Jewish population

Abstract

The use of anonymized stored tissue is a routine practice in genetic research. Investigators who utilize stored samples are neither required nor able to obtain informed consent before each use. Many genetic studies, however, are conducted on specific ethnic populations (e.g., Ashkenazi Jews). The results in these cases, although individually anonymous, are not anonymous with respect to the ethnicity of the participants. This lack of group anonymity has led to concern about the possibility of stigmatization and discrimination based on the results of the genetic research. In the present study we surveyed Jewish individuals about their attitudes regarding the practice of using stored DNA samples for genetic research. Specifically, we were interested in whether attitudes about informed consent and willingness to participate in genetics research using stored DNA would depend on the circumstances in which the material was collected (i.e., clinical setting vs. research setting) and the characteristics of the disease or trait under investigation. Overall, most respondents reported that written informed consent should be required and that they would be willing to provide such consent. Participants were most willing to provide consent, however, when the sample had been collected in a research rather than clinical setting. Further, participants were more likely to endorse the need for obtaining consent when the sample was collected in a clinical setting. Finally, participants were significantly less willing to participate in research that examined stereotypical or potentially stigmatizing traits as opposed to research that examined medical or mental illnesses.

Informed Consent for Biorepositories: Assessing Prospective Participants' Understanding and Opinions

“…Several previous studies from the United States have focused on attitudes among persons who had already contributed tissue for research (11)(12)(13)(14)(15); others involved population-based surveys of specific groups regarding use of stored tissue for research and the need for consent (16)(17)(18)(19)(20). Still, questions remain: how can the collection, storage, and future research use of specimens and data be described so that prospective participants can make informed decisions?…”

Biobank Recruitment: Motivations for Nonparticipation

“…In addition, recent studies suggest concerns about data sharing 1 and return of research results, 2,3 or future research topics (eg, stereotypical or potentially stigmatizing traits). 4 We evaluated the interest in participating in a biobank and reasons for nonparticipation.This research was part of the development of a biobank at Kaiser Permanente Northwest (KPNW), an integrated healthcare delivery system in Oregon and Washington. Eventually, we plan to invite all adult members to contribute blood samples that are left-over after routine clinical visits.…”

“…In addition, recent studies suggest concerns about data sharing 1 and return of research results, 2,3 or future research topics (eg, stereotypical or potentially stigmatizing traits). 4 We evaluated the interest in participating in a biobank and reasons for nonparticipation.…”

Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

“…[20][21][22][23]58 An emerging body of research on biospecimen participation among ethnic groups revealed various concerns, such as stigmatization, loss of confidentiality, and a lack of trust in health care organizations. 6,[34][35][36][37][38][39]42 For example, Native Americans are often reluctant to consent to future unspecified research for fear that research results would stigmatize their community. 59 In addition, Native Americans are sensitive to the use of their specimens for the development of treatments by commercial entities because they perceive such treatments are often too expensive and, therefore, would be less available to them because of their economic status.…”