Dataset Information

Harvard Personal Genome Project: lessons from participatory public research.

ABSTRACT: BACKGROUND: Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an 'open consent' framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. DISCUSSION: Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. SUMMARY: We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants.

SUBMITTER: Ball MP

PROVIDER: S-EPMC3978420 | biostudies-literature | 2014

REPOSITORIES: biostudies-literature

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Harvard Personal Genome Project: lessons from participatory public research.

Ball Madeleine P MP Bobe Jason R JR Chou Michael F MF Clegg Tom T Estep Preston W PW Lunshof Jeantine E JE Vandewege Ward W Zaranek Alexander A Church George M GM

Genome medicine 20140228 2

<h4>Background</h4>Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an 'open consent' framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment.<h4>Discussion</h4>Our model of non-anonymous, public genomes has led us to a highly participatory model o ...[more]

PMID: 24713084

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Project description:BACKGROUND AND OBJECTIVES:Despite the widespread acknowledgement of the importance of childhood oral health, little progress has been made in preventing early childhood caries. Limited information exists regarding specific daily-life and community-related factors that impede optimal oral hygiene, diet, care, and ultimately oral health for children. We sought to understand what parents of young children consider important and potentially modifiable factors and resources influencing their children's oral health, within the contexts of the family and the community. METHODS:This qualitative study employed Photovoice among 10 English-speaking parents of infants and toddlers who were clients of an urban WIC clinic in North Carolina. The primary research question was: "What do you consider as important behaviors, as well as family and community resources to prevent cavities among young children?" Five group sessions were conducted and they were recorded, transcribed verbatim and analyzed using qualitative research methodology. Inductive analyses were based on analytical summaries, double-coding, and summary matrices and were done using Atlas.ti.7.5.9 software. FINDINGS:Good oral health was associated with avoidance of problems or restorations for the participants. Financial constraints affected healthy food and beverage choices, as well as access to oral health care. Time constraints and occasional frustration related to children's oral hygiene emerged as additional barriers. Establishment of rules/routines and commitment to them was a successful strategy to promote their children's oral health, as well as modeling of older siblings, cooperation among caregivers and peer support. Community programs and organizations, social hubs including playgrounds, grocery stores and social media emerged as promising avenues for gaining support and sharing resources. CONCLUSIONS:Low-income parents of young children are faced with daily life struggles that interfere with oral health and care. Financial constraints are pervasive, but parents identified several strategies involving home care and community agents that can be helpful. Future interventions aimed to improve children's oral health must take into consideration the role of families and the communities in which they live.

Project description:BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.MethodsWe conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.

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Dataset Information

Harvard Personal Genome Project: lessons from participatory public research.

Publications

Harvard Personal Genome Project: lessons from participatory public research.

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