Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board

@article{Holm2014GuidelinesFR,
  title={Guidelines for return of research results from pediatric genomic studies: deliberations of the Boston Children’s Hospital Gene Partnership Informed Cohort Oversight Board},
  author={Ingrid A Holm and Sarah K. Savage and Robert C Green and Eric T. Juengst and A. McGuire and Susan Z Kornetsky and Stephanie Jo Brewster and Steven Joffe and Patrick W Taylor},
  journal={Genetics in Medicine},
  year={2014},
  volume={16},
  pages={547-552}
}
Purpose:Approaches to return individual results to participants in genomic research variably focus on actionability, duty to share, or participants’ preferences. Our group at Boston Children’s Hospital has prioritized participants’ preferences by implementing the Gene Partnership, a genomic research repository, based on the “Informed Cohort” model that offers return of results in accordance with participant preferences. Recognizing that ethical oversight is essential, the Gene Partnership… CONTINUE READING

From This Paper

Figures, tables, and topics from this paper.

Citations

Publications citing this paper.
Showing 1-10 of 20 extracted citations

References

Publications referenced by this paper.
Showing 1-10 of 20 references

Similar Papers

Loading similar papers…