Aim Genetic research representative of the population is crucial to understanding the underlying causes of many diseases. In a prospective evaluation of informed consent we assessed the willingness of individuals of different ethnicities, gender and drug dependence history to participate in genetic studies in which their genetic sample could be shared with a repository at the National Institutes of Health.
Methods Potential subjects were recruited from the general population through the use of flyers and referrals from previous participants and clinicians with knowledge of our study. They could consent to 11 separate choices so that they could specify how and with whom their genetic sample could be shared. Rates of affirmative consent were then analysed by gender, ethnicity and drug dependence history.
Results Of 1416 volunteers enrolled, 99.7% gave affirmative informed consent for studies of addiction conducted in our laboratory. No significant difference was found for participation in genetic studies conducted in our laboratory by gender, ethnicity or drug dependence history. Over all 11 questions, individuals with a history of drug use were more likely to agree to consent to participate in our study than were healthy volunteers.
Conclusion A high percentage of each category of gender, ethnicity and drug history, gave affirmative consent at all levels. The level of detail in and the amount of time spent reviewing the informed consent, and a relationship of trust with the clinical investigator may contribute to this outcome.
- Informed consent
- behavioural genetics
- applied and professional ethics
- scientific research
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
CJ, BR and SH had full access to all of the data in the study and take full responsibility for the integrity of the data and the accuracy of the data analysis.
Funding This evaluation was supported by the NIH-NIDA Research Center Grant (P60-DA05130) (MJK), the NIH-National Center for Research Resources Award (NCRR) Center for Clinical and Translational Science (CTSA) (UL1-RR024143) (B. Coller) and The Adelson Medical Research Foundation.
Competing interests None.
Ethics approval This study was conducted with the approval of the The Rockefeller University Institutional Review Board and the Institutional Review Board of the Veterans Administration New York Harbor Healthcare System.
Provenance and peer review Not commissioned; externally peer reviewed.
Read the full text or download the PDF:
Other content recommended for you
- Patient Characteristics and Participation in a Genetic Study
- Informed consent, participation in, and withdrawal from a population based cohort study involving genetic analysis
- Ethical issues in using a cocaine vaccine to treat and prevent cocaine abuse and dependence
- Issues of consent and feedback in a genetic epidemiological study of women with breast cancer
- Collecting genetic samples and linked mental health data from adolescents in schools: protocol coproduction and a mixed-methods pilot of feasibility and acceptability
- Achieving online consent to participation in large-scale gene-environment studies: a tangible destination
- Ethical aspects of research into Alzheimer disease. A European Delphi Study focused on genetic and non-genetic research
- Tobacco and alcohol use among drug users receiving methadone maintenance treatment: a cross-sectional study in a rural prefecture of Yunnan Province, Southwest China
- Health and well-being management in the military: a systematic review of genetic studies
- Ethics of genetic testing and research in sport: a position statement from the Australian Institute of Sport