title: 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.
authors.affiliation: Department of Oncology, Lombardi Cancer Center, Georgetown University Medical Center, 2233 Wisconsin Ave. NW, Suite 317, Washington, DC 20007, USA. Schwartm@georgetown.edu
authors.forename: M D
authors.initials: MD
authors.lastname: Schwartz
authors.forename: K
authors.initials: K
authors.lastname: Rothenberg
authors.forename: L
authors.initials: L
authors.lastname: Joseph
authors.forename: J
authors.initials: J
authors.lastname: Benkendorf
authors.forename: C
authors.initials: C
authors.lastname: Lerman
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001290:Attitude; D004247:DNA / Q000235:genetics*; D003625:Data Collection / Q000706:statistics & numerical data; D005260:Female; D006801:Humans; D007258:Informed Consent; D007585:Jews; D008297:Male; D008875:Middle Aged; D012106:Research
chemical_list: D004247:DNA