Researcher practices on returning genetic research results

Area of Science:

• Genetics
• Genomics
• Bioethics

Background:

• The increasing prevalence of genetic and genomic research raises questions about returning findings to participants.
• Ethical, logistical, and financial considerations are crucial, yet data on actual researcher practices are scarce.

Purpose of the Study:

• To assess the frequency with which researchers consider, offer, and return individual research results from genetic and genomic studies.
• To identify factors influencing these decisions and the communication methods used.

Main Methods:

• An online survey was distributed to 446 corresponding authors of US-based genetic/genomic studies published in 2006-2007.
• The survey assessed the consideration, offering, and return of research results, influencing factors, and communication strategies.

Main Results:

• The response rate was 24% (105 authors).
• 54% considered returning results, 28% offered, and 24% actually returned individual results.
• Clinical utility and participant respect were primary considerations; medical degree holders and those studying children were more likely to return results.

Conclusions:

• Concerns about clinical validity and participant respect appear to outweigh logistical issues in returning genetic research results.
• A significant proportion of researchers do not consider returning results, highlighting a need for greater attention from researchers and IRBs.