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. Author manuscript; available in PMC: 2013 Jun 19.
Published in final edited form as: Hum Genet. 2012 May 24;131(9):1423–1431. doi: 10.1007/s00439-012-1177-z

Table 1. Workshop Discussion Framework.

Topic Area Overarching Discussion Question Primary Ethical Concerns
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


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


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


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