PopGen Ethical Considerations

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					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

   Cultural/Social
       Religious Isolates
          [e.g., Amish, Hutterites, Ashkenazi Jews]


   Historic/Political/Ethnic
       Utah Mormons, Native American, African-
        American
                               ELSI
   Research Access
   Consent Process
       Group vs. Individual

   Risk/Benefit Assessment
   Reporting Constraints
   Continuing Communication
                                 Ethical Goals


   Justice
     Benefits and Burdens of research fairly distributed


   Beneficence
     Benefits maximized; Risks minimized


   Respect
     Voluntary & Informed Consent
                      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
                  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
BIOPIRACY
                        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]
                          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
                          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
KNOW LOCAL KNOWLEDGE
                Norwegian Survey



• Q: What is a gene?

• A: What Americans put in
  tomatoes.

                       [Courtesy of Andrew Luca]
                             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
                         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
                                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
                       Anonymity


 Why Anonymize?
   Assure Privacy
   Maintain Confidentiality


 Anonymity can work effectively
  to protect individuals, but may
  not be effective for groups - the
  base of population based
  research strategies
           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
           Consultation & Consent


   Multiple successful models

   Context, population specific

   ONE SIZE DOES NOT FIT
    ALL
                                 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
                                     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
                                Finis

The fact that an opinion has been
 widely
held is no evidence whatever that it is
 not
utterly absurd.

                  Bertrand Russell
                                      Acknowledgments

Permissions for Destructive Analysis          Funding
  Aleut Corporation                           • Office of Polar Programs, National
  Chaluka Corporation                           Science Foundation
  Aleutian and Pribilof Islands Association   • Wenner Gren Foundation for
  Inuit Heritage Trust                          Anthropological Research
  Kivalliq Inuit Association                  • Natural Sciences and Engineering
                                                Research Council of Canada
  Coral Harbour & Chesterfield Inlet
  communities                                 • University of Utah

Samples                                       Colleagues & Collaborators
  Canadian Museum of Civilization             • Shawn Carlyle, Hank Greely, Henry
                                                Harpending, Eric Juengst, Allen McCartney,
  Smithsonian Institution                       James O’Connell, Doug Veltre, Dixie West
  Western Aleutian Archaeological and
  Paleobiology Project                        • Special appreciation to the Norton Sound
                                                Health Corporation Scientific Advisory
                                                Board

				
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