consultation and consent: ethical issues in human population genetic research
DESCRIPTION
Consultation and Consent: Ethical Issues in Human Population Genetic Research. Dennis H. O’Rourke Department of Anthropology University of Utah Salt Lake City UT 2 November 2006. Populations Defined. Geographic Sardinia, Iceland, Pacific Islands, Mountain Valleys, Arctic - PowerPoint PPT PresentationTRANSCRIPT
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Consultation and Consent:
Ethical Issues inHuman Population
Genetic Research
Dennis H. O’RourkeDepartment of AnthropologyUniversity of UtahSalt Lake City UT
2 November 2006
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Populations Defined
Geographic Sardinia, Iceland, Pacific Islands, Mountain Valleys, Arctic
Cultural/Social Religious Isolates
[e.g., Amish, Hutterites, Ashkenazi Jews]
Historic/Political/Ethnic Utah Mormons, Native American, African-American
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ELSI
Research Access Consent Process
Group vs. Individual
Risk/Benefit Assessment Reporting Constraints Continuing Communication
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Ethical Goals
JusticeBenefits and Burdens of research fairly distributed
BeneficenceBenefits maximized; Risks minimized
RespectVoluntary & Informed Consent
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Initial Study Design
Initiate Community Dialogue Early Involve Community in Study Design
How are Decisions Made? Collectively or Individually? In family or lineage groups? Public or Private discussions?
Culturally appropriate locus for decision making
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Community Negotiation
Permission to Collect Data Scope of Project
Options for Population Identification Name community, [ethnic] group/affiliation, geographic location/region, anonymity
Fate of analyzed samples Archival samples, future research, immortalization of cell lines, extraction of stem cells?
Intellectual Property Issues
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BIOPIRACY
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BIOWEAPONS Genuine fear of [continuing?] Genocide
Often based on historical precedent e.g., Tuskegee Study
Fueled by popular press -
“Gene Research is Leading to Biological Weapons that Target Specific Ethnic Groups”
[SLC Tribune headline - 2002]
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Informed Consent What are consent boundaries?
e.g., Anonymity, Voluntary withdrawal, Financial risk
How to inform participants re genetic research if basic knowledge of scientific method is limited?
Risks Personal, Cultural, Ethnic Identities,
Individual Informed Consent Not entirely adequate in contexts of collective decision making
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Informed Consent What are consent boundaries?
e.g., Anonymity, Voluntary withdrawal, Financial risk
How to inform participants re genetic research if basic knowledge of scientific method is limited?
Risks Personal, Cultural, Ethnic Identities,
Individual Informed Consent Not entirely adequate in contexts of collective decision making
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KNOW LOCAL KNOWLEDGE
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Norwegian Survey
•Q: What is a gene?
•A: What Americans put in tomatoes.
[Courtesy of Andrew Luca]
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Informed Consent What are consent boundaries?
e.g., Anonymity, Voluntary withdrawal, Financial risk
How to inform participants re genetic research if basic knowledge of scientific method is limited?
Risks• Personal, Cultural, Ethnic Identities, Thomas Jefferson/Sally Hemmings case; African-American heritage example
Individual Informed Consent Not entirely adequate in contexts of collective decision making
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Informed Consent What are consent boundaries?
e.g., Anonymity, Voluntary withdrawal
How to inform participants re genetic research if basic knowledge of scientific method is limited?
Risks Personal, Cultural, Ethnic Identities, Financial considerations
Individual Informed Consent Not entirely, or completely, adequate in contexts of collective decision making
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Group Consent Who speaks for the group?
Community/political leaders? Cultural Leaders/Elders? Religious leaders?
Who identifies group spokespersons? Potential to change community power structure, and affect sampling strategy
What is relation between group consent and ‘informed’ or ‘voluntary’ individual consent? Group consent includes non-participants
Anonymity
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Anonymity
Why Anonymize?Assure PrivacyMaintain Confidentiality
Anonymity can work effectively to protect individuals, but may not be effective for groups - the base of population based research strategies
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Anonymity & Consent Boundaries
When is anonymity guaranteed? What is anonymized?
Individual ID? Group ID?
How does anonymity relate to group consent? To privacy? To confidentiality?
Anonymity can compromise ‘voluntary’ withdrawal
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Consultation & Consent
Multiple successful models
Context, population specific
ONE SIZE DOES NOT FIT ALL
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Summary
Patience is not a virtue - It is a necessity
If group consent is appropriate, add 50% to project design time - then double it
Don’t oversell
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Finis
The problem is that no ethical system has ever achieved consensus. Ethical systems are completely unlike mathematics or science. This is a source of concern.
Daniel Dennett
By nature's kindly disposition most questions which it is beyond a man's power to answer do not occur to him at all.
George Santayana
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Finis
The fact that an opinion has been widely
held is no evidence whatever that it is not
utterly absurd.
Bertrand Russell
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Acknowledgments
Permissions for Destructive AnalysisAleut CorporationChaluka CorporationAleutian and Pribilof Islands AssociationInuit Heritage TrustKivalliq Inuit AssociationCoral Harbour & Chesterfield Inlet communities
SamplesCanadian Museum of CivilizationSmithsonian InstitutionWestern Aleutian Archaeological and Paleobiology Project
Funding• Office of Polar Programs, National
Science Foundation• Wenner Gren Foundation for
Anthropological Research• Natural Sciences and Engineering
Research Council of Canada• University of Utah
Colleagues & Collaborators• Shawn Carlyle, Hank Greely, Henry
Harpending, Eric Juengst, Allen McCartney, James O’Connell, Doug Veltre, Dixie West
• Special appreciation to the Norton Sound Health Corporation Scientific Advisory Board