Am J Bioeth. 2008 Nov;8(11):36-43.

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

Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K.

Source

Genetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC 20036, USA. jmurph46@jhu.edu

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.

Comment in

PMID:: 19061108; [PubMed - indexed for MEDLINE]
PMCID:: PMC2682364

Free PMC Article

LinkOut - more resources

Full Text Sources

Other Literature Sources

Labome Researcher Resource - ExactAntigen/Labome

Medical

Supplemental Content

Save items

Related citations in PubMed

Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion. [Am J Med Genet C Semin Med Gen...]
Ethical implications of including children in a large biobank for genetic-epidemiologic research: a qualitative study of public opinion.
Kaufman D, Geller G, Leroy L, Murphy J, Scott J, Hudson K. Am J Med Genet C Semin Med Genet. 2008 Feb 15; 148C(1):31-9.
Final Report on Carcinogens Background Document for Formaldehyde. [Rep Carcinog Backgr Doc. 2010]
Final Report on Carcinogens Background Document for Formaldehyde.
National Toxicology Program. Rep Carcinog Backgr Doc. 2010 Jan; (10-5981):i-512.
Public and biobank participant attitudes toward genetic research participation and data sharing. [Public Health Genomics. 2010]
Public and biobank participant attitudes toward genetic research participation and data sharing.
Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME. Public Health Genomics. 2010; 13(6):368-77. Epub 2010 Jan 15.
Review Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries. [BMC Med Ethics. 2010]
Review Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries.
Ries NM, LeGrandeur J, Caulfield T. BMC Med Ethics. 2010 Mar 23; 11(1):4. Epub 2010 Mar 23.
Review The standard of disclosure in human subject experimentation. [J Leg Med. 1998]
Review The standard of disclosure in human subject experimentation.
Morin K. J Leg Med. 1998 Jun; 19(2):157-221.

See reviews... See all...

Cited by 17 PubMed Central articles

New models for large prospective studies: is there a better way? [Am J Epidemiol. 2012]
New models for large prospective studies: is there a better way?
Manolio TA, Weis BK, Cowie CC, Hoover RN, Hudson K, Kramer BS, Berg C, Collins R, Ewart W, Gaziano JM, et al. Am J Epidemiol. 2012 May 1; 175(9):859-66. Epub 2012 Mar 12.
Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research. [J Empir Res Hum Res Ethics. 2012]
Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.
Freeman BD, Kennedy CR, Bolcic-Jankovic D, Eastman A, Iverson E, Shehane E, Celious A, Barillas J, Clarridge B. J Empir Res Hum Res Ethics. 2012 Feb; 7(1):58-70.
Testing for sexually transmitted infections in a population-based sexual health survey: development of an acceptable ethical approach. [J Med Ethics. 2012]
Testing for sexually transmitted infections in a population-based sexual health survey: development of an acceptable ethical approach.
Field N, Tanton C, Mercer CH, Nicholson S, Soldan K, Beddows S, Ison C, Johnson AM, Sonnenberg P. J Med Ethics. 2012 Jun; 38(6):380-2. Epub 2012 Jan 17.

See all...

Related information

Related Citations
Calculated set of PubMed citations closely related to the selected article(s) retrieved using a word weight algorithm. Related articles are displayed in ranked order from most to least relevant, with the “linked from” citation displayed first.
References for this PMC Article
Citation referenced in PubMed article. Only valid for PubMed citations that are also in PMC.
Free in PMC
Free full text articles in PMC
Cited in PMC
Full-text articles in the PubMed Central Database that cite the current articles.

Recent activity

Clear Turn Off Turn On

Public expectations for return of results from large-cohort genetic research.
Public expectations for return of results from large-cohort genetic research.
Am J Bioeth. 2008 Nov ;8(11):36-43.

PubMed
Publicly-accessible QSAR software tools developed by the Joint Research Centre.
Publicly-accessible QSAR software tools developed by the Joint Research Centre.
SAR QSAR Environ Res. 2008 ;19(7-8):785-99.

PubMed
Halfway houses for alcohol dependents: from theoretical bases to implications fo...
Halfway houses for alcohol dependents: from theoretical bases to implications for the organization of facilities.
Clinics (Sao Paulo). 2008 Dec ;63(6):827-32.

PubMed
Prevalence of sexual dysfunction and its associated factors in women aged 40-65 ...
Prevalence of sexual dysfunction and its associated factors in women aged 40-65 years with 11 years or more of formal education: a population-based household survey.
Clinics (Sao Paulo). 2008 Dec ;63(6):775-82.

PubMed
BK channels regulate spontaneous action potential rhythmicity in the suprachiasm...
BK channels regulate spontaneous action potential rhythmicity in the suprachiasmatic nucleus.
PLoS One. 2008 ;3(12):e3884. Epub 2008 Dec 8 .

PubMed

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

PubMed

Result Filters

Display Settings:

Send to:

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

Source

Abstract

Comment in

Publication Types, MeSH Terms, Grant Support

Publication Types

MeSH Terms

Grant Support

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Supplemental Content

Save items

Related citations in PubMed

Cited by 17 PubMed Central articles

Related information

Recent activity

Simple NCBI Directory

Getting Started

Resources

Popular

Featured

NCBI Information