Stephanie Malia Fullerton

Stephanie Malia Fullerton

orcid

Research Focus & Metrics

Academic Career Length

33Years (1994-Present)

(Calculated once Scilit publication data is synced: current year − year of first publication + 1)

Representative Publications

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12 October 2016 in Nature
Verified
Journal Article
Closed access
APAlice B. Popejoy
Alice B. Popejoy
SFStephanie Malia Fullerton
Stephanie Malia Fullerton

1 October 2000 in The American Journal of Human Genetics
Verified
Journal Article
Closed access
SFStephanie Malia Fullerton
Stephanie Malia Fullerton
ACAndrew G. Clark
Andrew G. Clark
KWKenneth M. Weiss
Kenneth M. Weiss
DNDeborah A. Nickerson
Deborah A. Nickerson
STScott L. Taylor
Scott L. Taylor
CSCharles F. Sing
Charles F. Sing

3 April 2012 in Nature Reviews Genetics
Verified
Journal Article
Closed access
PDF file
JKJane Kaye
Jane Kaye
LCLiam Curren
Liam Curren
NANick Anderson
Nick Anderson
KEKelly Edwards
Kelly Edwards
SFStephanie Malia Fullerton
Stephanie Malia Fullerton
SWStefan F. Winter
Stefan F. Winter

1 May 2010 in The American Journal of Human Genetics
Verified
Journal Article
Closed access
CRCharmaine D. Royal
Charmaine D. Royal
JNJohn Novembre
John Novembre
SFStephanie Malia Fullerton
Stephanie Malia Fullerton
DGDavid B. Goldstein
David B. Goldstein
JLJeffrey C. Long
Jeffrey C. Long
ACAndrew G. Clark
Andrew G. Clark

1 August 2010 in Genetics in Medicine
Verified
Journal Article
Open access
PDF file
STSusan Brown Trinidad
Susan Brown Trinidad
SFStephanie Malia Fullerton
Stephanie Malia Fullerton
JBJulie M. Bares
Julie M. Bares
GJGail P. Jarvik
Gail P. Jarvik
ELEric B. Larson
Eric B. Larson
WBWylie Burke
Wylie Burke
Purpose: Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research. Methods: Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18–34 years, 35–50, >50). Results: Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Conclusions: Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.

1 May 2000 in Theoretical Population Biology
Verified
Journal Article
Closed access
KWKenneth M. Weiss
Kenneth M. Weiss
SFStephanie Malia Fullerton
Stephanie Malia Fullerton