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Establishing Precompetitive Collaborations to Stimulate Genomics-Driven Product Development Workshop Summary (2011) / Chapter Skim
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6 Ethical Challenges in the Use of Biospecimens
Pages 45-48

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From page 45...
... · Investigators and biobanks need to decide explicitly on the level of identifiability that they will maintain in the specimens and data they use. Many patients are comfortable with the sharing of their personal biomedical data because they trust the institution asking them to participate, observed Ellen Wright Clayton, professor of genetics and health policy and director of the Center for Biomedical Ethics and Society at Vanderbilt University.
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From page 46...
... A tremendous amount of epidemiological research and other types of investigations have been done in the United States for decades without any informed consent or notification whatsoever, according to Clayton. She said that the research community has moved to the point of recognizing that people and communities need to know more about what is being done in the research environment and with their information.
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From page 47...
... health care that we need." DISCuSSION In response to a question about increasing the diversity of the population represented in biorepositories and how to address the fears of nonwhite participants about the potential misuse of biological samples, Clayton said that "some of their distrust is well earned." Overcoming these fears will mean earning their trust. "It is community engagement, it is responsiveness, it is including individuals, and [it is]
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Key Terms

  • informed consent
  • research entails
  • significant ethical
  • ethical obligations
  • receive information

  • entails significant
  • deidentified genetic
  • linkages create
  • vanderbilt university
  • return research

  • epidemiological research
  • biomedical ethics
  • protect privacy
  • medical data
  • carolyn compton

  • tional samples
  • community engagement
  • ethical considerations
  • tell research
  • clayton noted

  • stated clayton
  • identifiable data
  • sharing data
  • sharing samples
  • considerations associated

  • decide explicitly
  • cultural change
  • sending deidentified
  • serious ethical
  • absolutely essential


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