genomic data sharing;
public trust;
human research ethics committees;
waiver of consent;
Australia;
RESEARCH PARTICIPANTS;
PRIVACY;
D O I:
10.1177/15562646241261848
中图分类号:
B82 [伦理学(道德学)];
学科分类号:
摘要:
This research identifies the circumstances in which Human Research Ethics Committees (HRECs) are trusted by Australians to approve the use of genomic data - without express consent - and considers the impact of genomic data sharing settings, and respondent attributes, on public trust. Survey results (N = 3013) show some circumstances are more conducive to public trust than others, with waivers endorsed when future research is beneficial and when privacy is protected, but receiving less support in other instances. Still, results imply attitudes are influenced by more than these specific circumstances, with different data sharing settings, and participant attributes, affecting views. Ultimately, this research raises questions and concerns in relation to the criteria HRECs use when authorising waivers of consent in Australia.
机构:
Mem Univ, Fac Med, St John, NF A1B 3V6, CanadaMem Univ, Fac Med, St John, NF A1B 3V6, Canada
Etchegary, Holly
Darmonkov, Georgia
论文数: 0引用数: 0
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Mem Univ, Fac Med, St John, NF A1B 3V6, CanadaMem Univ, Fac Med, St John, NF A1B 3V6, Canada
Darmonkov, Georgia
Simmonds, Charlene
论文数: 0引用数: 0
h-index: 0
机构:
Mem Univ, Res Initiat & Serv, St John, NF A1B 3V6, CanadaMem Univ, Fac Med, St John, NF A1B 3V6, Canada
Simmonds, Charlene
Pullman, Daryl
论文数: 0引用数: 0
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机构:
Mem Univ, Fac Med, St John, NF A1B 3V6, CanadaMem Univ, Fac Med, St John, NF A1B 3V6, Canada
Pullman, Daryl
Rahman, Proton
论文数: 0引用数: 0
h-index: 0
机构:
Mem Univ, Fac Med, St John, NF A1B 3V6, Canada
Mem Univ, Eastern Reg Hlth Author, St John, NF A1B 3V6, CanadaMem Univ, Fac Med, St John, NF A1B 3V6, Canada
机构:
Univ Utah, 2138 S Preston St, Salt Lake City, UT 84106 USAUniv Utah, 2138 S Preston St, Salt Lake City, UT 84106 USA
Nick, Heather P.
Kehoe, Kelsey
论文数: 0引用数: 0
h-index: 0
机构:
Huntsman Canc Inst, Salt Lake City, UT USAUniv Utah, 2138 S Preston St, Salt Lake City, UT 84106 USA
Kehoe, Kelsey
Gammon, Amanda
论文数: 0引用数: 0
h-index: 0
机构:
Huntsman Canc Inst, Salt Lake City, UT USAUniv Utah, 2138 S Preston St, Salt Lake City, UT 84106 USA
Gammon, Amanda
Contreras, Jorge L.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Utah, 2138 S Preston St, Salt Lake City, UT 84106 USAUniv Utah, 2138 S Preston St, Salt Lake City, UT 84106 USA
Contreras, Jorge L.
Kaphingst, Kimberly A.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Utah, 2138 S Preston St, Salt Lake City, UT 84106 USA
Huntsman Canc Inst, Salt Lake City, UT USAUniv Utah, 2138 S Preston St, Salt Lake City, UT 84106 USA
机构:
Univ Sydney, Northern Clin Sch, Fac Med, North Sydney, AustraliaUniv Sydney, Northern Clin Sch, Fac Med, North Sydney, Australia
Hutchings, Elizabeth
Loomes, Max
论文数: 0引用数: 0
h-index: 0
机构:
Univ Sydney, Sch Psychol, Sydney, NSW, AustraliaUniv Sydney, Northern Clin Sch, Fac Med, North Sydney, Australia
Loomes, Max
Butow, Phyllis
论文数: 0引用数: 0
h-index: 0
机构:
Univ Sydney, Sch Psychol, Sydney, NSW, Australia
Ctr Med Psychol Evidence Based Decis Making CeMPE, Sydney, NSW, Australia
Univ Sydney, Psychooncol Cooperat Res Grp PoCoG, Sydney, NSW, AustraliaUniv Sydney, Northern Clin Sch, Fac Med, North Sydney, Australia
Butow, Phyllis
Boyle, Frances M.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Sydney, Northern Clin Sch, Fac Med, North Sydney, Australia
Mater Hosp, Patricia Ritchie Ctr Canc Care & Res, 25 Rocklands Rd North Sydney, Sydney, NSW 2060, AustraliaUniv Sydney, Northern Clin Sch, Fac Med, North Sydney, Australia
机构:
Newcastle Univ, Newcastle Clin Trials Unit, Newcastle Upon Tyne, Tyne & Wear, EnglandNewcastle Univ, Newcastle Clin Trials Unit, Newcastle Upon Tyne, Tyne & Wear, England
Howe, Nicola
Giles, Emma
论文数: 0引用数: 0
h-index: 0
机构:
Teesside Univ, Sch Hlth & Social Care, Publ Hlth, Middlesbrough, Cleveland, EnglandNewcastle Univ, Newcastle Clin Trials Unit, Newcastle Upon Tyne, Tyne & Wear, England
Giles, Emma
Newbury-Birch, Dorothy
论文数: 0引用数: 0
h-index: 0
机构:
Teesside Univ, Sch Hlth & Social Care, Alcohol & Publ Hlth Res, Middlesbrough, Cleveland, EnglandNewcastle Univ, Newcastle Clin Trials Unit, Newcastle Upon Tyne, Tyne & Wear, England
Newbury-Birch, Dorothy
McColl, Elaine
论文数: 0引用数: 0
h-index: 0
机构:
Newcastle Univ, Inst Hlth & Soc, Hlth Serv Res, Newcastle Upon Tyne, Tyne & Wear, EnglandNewcastle Univ, Newcastle Clin Trials Unit, Newcastle Upon Tyne, Tyne & Wear, England
机构:
UCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Great Ormond St Hosp Sick Children, London WC1N 3JH, England
Icahn Sch Med Mt Sinai, Dept Genet & Genom Sci, New York, NY 10029 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Sanderson, Saskia C.
Brothers, Kyle B.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Louisville, Dept Pediat, Louisville, KY 40202 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Brothers, Kyle B.
Mercaldo, Nathaniel D.
论文数: 0引用数: 0
h-index: 0
机构:
Vanderbilt Univ, Dept Biostat, Nashville, TN 37203 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Mercaldo, Nathaniel D.
Clayton, Ellen Wright
论文数: 0引用数: 0
h-index: 0
机构:
Vanderbilt Univ, Ctr Biomed Eth & Soc, Nashville, TN 37203 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Clayton, Ellen Wright
Antommaria, Armand H. Matheny
论文数: 0引用数: 0
h-index: 0
机构:
Cincinnati Childrens Hosp Med Ctr, Eth Ctr, Cincinnati, OH 45229 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Antommaria, Armand H. Matheny
Aufox, Sharon A.
论文数: 0引用数: 0
h-index: 0
机构:
Northwestern Univ, Ctr Genet Med, Chicago, IL 60611 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Aufox, Sharon A.
Brilliant, Murray H.
论文数: 0引用数: 0
h-index: 0
机构:
Marshfield Clin Res Fdn, Ctr Human Genet, Marshfield, WI 54449 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Brilliant, Murray H.
Campos, Diego
论文数: 0引用数: 0
h-index: 0
机构:
Childrens Hosp Philadelphia, Dept Biomed & Hlth Informat, Philadelphia, PA 19104 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Campos, Diego
Carrell, David S.
论文数: 0引用数: 0
h-index: 0
机构:
Grp Hlth Res Inst, Seattle, WA 98101 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Carrell, David S.
Connolly, John
论文数: 0引用数: 0
h-index: 0
机构:
Childrens Hosp Philadelphia, Ctr Appl Genom, Philadelphia, PA 19104 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Connolly, John
Conway, Pat
论文数: 0引用数: 0
h-index: 0
机构:
Essentia Inst Rural Hlth, Duluth, MN 55805 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Conway, Pat
Fullerton, Stephanie M.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Washington, Dept Bioeth & Humanities, Seattle, WA 98195 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Fullerton, Stephanie M.
Garrison, Nanibaa' A.
论文数: 0引用数: 0
h-index: 0
机构:
Seattle Childrens Res Inst, Treuman Katz Ctr Pediat Bioeth, Seattle, WA 98101 USA
Univ Washington, Div Bioeth, Dept Pediat, Seattle, WA 98101 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Garrison, Nanibaa' A.
Horowitz, Carol R.
论文数: 0引用数: 0
h-index: 0
机构:
Icahn Sch Med Mt Sinai, Dept Populat Hlth Sci & Policy, New York, NY 10029 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Horowitz, Carol R.
Jarvik, Gail P.
论文数: 0引用数: 0
h-index: 0
机构:
Univ Washington, Dept Genome Sci, Seattle, WA 98195 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Jarvik, Gail P.
Kaufman, David
论文数: 0引用数: 0
h-index: 0
机构:
NHGRI, Div Genom & Soc, Bethesda, MD 20892 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Kaufman, David
Kitchner, Terrie E.
论文数: 0引用数: 0
h-index: 0
机构:
Marshfield Clin Res Fdn, Ctr Human Genet, Marshfield, WI 54449 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Kitchner, Terrie E.
Li, Rongling
论文数: 0引用数: 0
h-index: 0
机构:
NHGRI, Div Genom Med, Bethesda, MD 20892 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Li, Rongling
Ludman, Evette J.
论文数: 0引用数: 0
h-index: 0
机构:
Grp Hlth Res Inst, Seattle, WA 98101 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Ludman, Evette J.
McCarty, Catherine A.
论文数: 0引用数: 0
h-index: 0
机构:
Essentia Inst Rural Hlth, Duluth, MN 55805 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
McCarty, Catherine A.
McCormick, Jennifer B.
论文数: 0引用数: 0
h-index: 0
机构:
Mayo Clin, Biomed Eth Program, Rochester, MN 55905 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
McCormick, Jennifer B.
McManus, Valerie D.
论文数: 0引用数: 0
h-index: 0
机构:
Marshfield Clin Res Fdn, Biomed Informat Res Ctr, Marshfield, WI 54449 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
McManus, Valerie D.
Myers, Melanie F.
论文数: 0引用数: 0
h-index: 0
机构:
Cincinnati Childrens Hosp Med Ctr, Genet Counseling Grad Program, Cincinnati, OH 45229 USA
Univ Cincinnati, Cincinnati, OH 45229 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Myers, Melanie F.
Scro, Aaron
论文数: 0引用数: 0
h-index: 0
机构:
Grp Hlth Res Inst, Seattle, WA 98101 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Scro, Aaron
Williams, Janet L.
论文数: 0引用数: 0
h-index: 0
机构:
Geisinger Hlth Syst, Genom Med Inst, Danville, PA 17822 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Williams, Janet L.
Shrubsole, Martha J.
论文数: 0引用数: 0
h-index: 0
机构:
Vanderbilt Univ, Med Ctr, Vanderbilt Epidemiol Ctr, Nashville, TN 37203 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Shrubsole, Martha J.
Schildcrout, Jonathan S.
论文数: 0引用数: 0
h-index: 0
机构:
Vanderbilt Univ, Dept Biostat, Nashville, TN 37203 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Schildcrout, Jonathan S.
Smith, Maureen E.
论文数: 0引用数: 0
h-index: 0
机构:
Northwestern Univ, Ctr Genet Med, Chicago, IL 60611 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England
Smith, Maureen E.
Hom, Ingrid A.
论文数: 0引用数: 0
h-index: 0
机构:
Boston Childrens Hosp, Div Genet & Genom, Boston, MA 02115 USA
Boston Childrens Hosp, Manton Ctr Orphan Dis Res, Boston, MA 02115 USAUCL, Dept Behav Sci & Hlth, London WC1E 6BT, England