Open Access Research article

Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study

Samantha M Kerath24, Gila Klein2, Marlena Kern2, Iuliana Shapira3, Jennifer Witthuhn2, Nicole Norohna2, Myriam Kline2, Farisha Baksh2, Peter Gregersen2 and Emanuela Taioli14*

Author Affiliations

1 Hofstra-North Shore School of Medicine, 175 Community Drive, Great Neck, NY 11021, USA

2 Feinstein Institute for Medical Research, North Shore- Long Island Jewish Health System, 350 Community Drive, Great Neck, NY, 11021, USA

3 Monter Cancer Center, North Shore- Long Island Jewish Health System, 450 Lakeville Road, Lake Success, NY, 11042, USA

4 North Shore- Long Island Jewish Health System, 175 Community Drive, Great Neck, NY 11021, USA

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BMC Public Health 2013, 13:114  doi:10.1186/1471-2458-13-114

Published: 7 February 2013

Abstract

Background

Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed.

Methods

Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards genetic research. These questions addressed individual participant’s beliefs about the importance of genetic research, willingness to participate in genetic research themselves, and their views on informed consent issues.

Results

Respondents took a generally positive view of genetic research in general, as well as their own participation in such research. Those with reservations were most likely to cite concerns over the privacy of their medical and genetic information. Those who were married tended to view genetic research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for genetic research. Demographic factors were not found to be predictive of personal willingness to participate in genetic research, or of approval for the opt-out approach to consent.

Conclusions

While respondents were generally inclined to approve of genetic research, and those who disapproved did not do so based on an underlying moral objection to such research, there is a disconnect between the belief in the importance of genetic research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways in which genetic materials are safeguarded once they are collected. Also indicated was a general lack of understanding about the various consent processes that go along with genetic research, which should be addressed further to ensure the successful continuation of biobanks.

Keywords:
Biological specimen banks; Genetic research; Public opinion