Public expectations for return of results from large-cohort genetic research

American Journal of Bioethics 8 (11):36 – 43 (2008)
Abstract
The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received.
Keywords No keywords specified (fix it)
Categories (categorize this paper)
DOI 10.1080/15265160802513093
Options
 Save to my reading list
Follow the author(s)
My bibliography
Export citation
Find it on Scholar
Edit this record
Mark as duplicate
Revision history
Request removal from index
Download options
Our Archive


Upload a copy of this paper     Check publisher's policy     Papers currently archived: 28,829
Through your library
References found in this work BETA
Best Laid Plans for Offering Results Go Awry.Lisa S. Parker - 2006 - American Journal of Bioethics 6 (6):22 – 23.

View all 10 references / Add more references

Citations of this work BETA

View all 9 citations / Add more citations

Similar books and articles
The Return of Results of Deceased Research Participants.Anne Marie Tassé - 2011 - Journal of Law, Medicine & Ethics 39 (4):621-630.
Familial Communication of Research Results: A Need to Know?Lee Black & Kelly A. McClellan - 2011 - Journal of Law, Medicine & Ethics 39 (4):605-613.

Monthly downloads

Added to index

2009-01-28

Total downloads

15 ( #318,183 of 2,178,178 )

Recent downloads (6 months)

1 ( #316,504 of 2,178,178 )

How can I increase my downloads?

My notes
Sign in to use this feature


Discussion
Order:
There  are no threads in this forum
Nothing in this forum yet.

Other forums