Article

Public preferences regarding informed consent models for participation in population-based genomic research

1] Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, Michigan, USA [2] Department of Health Management and Policy, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
Genetics in medicine: official journal of the American College of Medical Genetics (Impact Factor: 7.33). 05/2013; 16(1). DOI: 10.1038/gim.2013.59
Source: PubMed

ABSTRACT

Purpose:
Some large population biobanks that house biospecimens and health information for research seek broad consent from participants, whereas others reconsent for specific new studies. Understanding research participants' attitudes and preferences about broad and narrow consent may improve recruitment, retention, and public support.

Methods:
An online survey was conducted among a representative sample of 4,659 US adults to examine relationships between consent preferences and demographic factors, beliefs about privacy and the value of research, and the perceived trustworthiness of researchers.

Results:
Participants preferred broad consent (52%) over study-by-study consent models (48%). Higher preferences for study-by-study consent observed among black non-Hispanic respondents and respondents with lower income and education were explained by differences in the prevalence of one or more beliefs about the study. Respondents with fears about research and those who would feel respected if asked for permission for each research use preferred study-by-study consent. Preference for broad consent was related to the desire not to be bothered with multiple requests and the belief that the study could lead to improved treatments, cures, and lives saved.

Conclusion:
These data suggest that support for broad consent is contingent on sufficient information about data use. Work with research participants and community leaders to understand, respond to, and influence opinions about a given, ongoing study may improve uptake of broad consent.

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    • "It would be more productive to pay attention to potential differences among donors'' (2010: 346). For example, in some societies certain ethnic groups may be more concerned than others about access to their biological samples by law-enforcing institutions (Kaufman et al. 2009; other studies looking at the influence of demographic and cultural variables include Platt et al. 2014; Hull et al. 2008; Fong et al. 2004; Goldenberg et al. 2011; Wendler and Emanuel 2002; Ma et al. 2012; see also Hoeyer 2010; Hussain-Gambles et al. 2004). We believe that there is a need to conduct more empirical research on what considerations are potentially relevant to research participants. "
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    • "In this study, the study-specific model was the second most preferred, with some participants noting that they felt in control with this model and that it provided the most amount of information about secondary research uses. However, some participants also viewed the study-specific model as time-consuming , wasteful, and burdensome, as also observed in prior studies (Hoeyer et al. 2004; Master et al. 2013; Murphy et al. 2009; Platt et al. 2013). We found some differences in qualitative themes about the study-specific model by race, with White participants in particular believing that this model would lead to too much contact, while having specific information about secondary research uses and being asked permission for each study were particularly important among Black participants. "
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    • "They also have the capacity to make trade-offs between the benefits of sharing private information and the resulting risks to their privacy, that institutions holding their data do not possess. Studies have repeatedly shown that individuals differ widely in how they weigh such risks and benefits [Genetics & Public Policy Center, 2007; Institute of Medicine (US) Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule, 2009; Kaufman et al., 2009, 2012; Platt, 2014] and judgments about the trade-offs they make may change over time as circumstances change. A governance system that empowered individuals to make decisions about whether or not they wanted to assume such risks, and that permitted them to change their preferences over time, would capitalize on individuals' ability to share additional information and introduce a capacity for sharing far beyond what would be permissible legally, or even ethically, in the absence of such a mechanism. "
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