1. Recruitment for Additional Genetic Research (“Recontact”) |
When is it acceptable or not acceptable to recontact genetic research participants for recruitment into additional genetic research? |
Providing participants welcome opportunities to hear about additional research
Facilitating researchers' ability to recruit participants to address important research questions
Protecting participants from unwelcome contact from researchers
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2. Disclosure of Results in the Process of Genotype Driven Recruitment |
When is it acceptable or not acceptable to disclose individual genetic research results from the first study during the process of genotype-driven recruitment for further research? |
Avoiding the disclosure of unwanted and/or uncertain genetic information
Avoiding leaving participants uninformed about why they are eligible for the additional research
Allowing participants to decide for themselves what kind of information is personally meaningful
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3. Identifying Best Practices for the Process of Genotype-Driven Recruitment |
Moving forward, what approaches to genotype-driven recruitment are optimal to respect and protect participants, minimize ethical dilemmas, and facilitate recruitment into beneficial research? |
Providing participants adequate information to make an informed decision about further research participation
Avoiding participant and/or family member misunderstanding or undue distress with regard to genotype-driven recruitment
Avoiding overly restrictive policies that could have a chilling effect on beneficial research and limit opportunities for those who want to take part
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4. Genotype-Driven Recruitment: Special Complexities |
How does genotype-driven recruitment either attenuate or amplify obligations to return genetic research results? |
Thresholds typically discussed for disclosure of individual genetic research results will not be met in many or most cases of genotype-driven recruitment
However, nondisclosure may require obfuscation of the rationale for the additional research and why participants are eligible
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