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Privacy Issues in Biomedical and Clinical Research (1998) / Chapter Skim
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Appendix C: A Comment by Frederick R. Anderson
Pages 35-39

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From page 35...
... We need to restore the balance between individual rights and social responsibility in the policies we adopt, including, as David Korn put it, selecting the right "equipoise" between protecting the privacy and rights of research subjects and patients, on the one hand, and the need for data that will enable biomedical research to advance, on the other. At present, our lawmakers may be on the verge of a proliferation of rights that may delay striking the optimum balance for years and may impede biomedical research with little gain in the protection of individual research subjects.
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From page 36...
... genetic predisposition to disease and injury is better understood, and (3) a significant part of a person's ordinary medical care becomes genetics-based, the pressure to use this wealth of information in health care delivery, family planning, employment decisions, and life and health insurance will be overwhelming.
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From page 37...
... It became clear at the workshop that the impact of legislation drafted primarily to prevent insurers from denying coverage may "spill over" into biomedical research, with researchers swept along with insurers in being denied access to genetic data. Because of its pivotal role in the current debate, insurance deserves special mention here.
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From page 38...
... That is to afford insurers an opportunity to develop entirely new products, in competition with each other, and in collaboration with their customers and their families, health care providers, and a new generation of family financial advisers who are sure to arise as the genetic revolution continues. If insurers can meet the challenge that is currently viewed as the most difficult to resolve, i.e., providing affordable privately financed insurance that takes account of the insured's genetic profile, then issues about access to genetic data for research, and about complete and accessible medical records for treatment and family planning, should be easier to resolve.
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From page 39...
... If I correctly read the workshop, his position captured the desire, if not the actual agenda, of most workshop participants. As a lawyer who works in the legislative and regulatory arenas of Washington, it struck me that the various institutions and points of view represented around the table could form an effective coalition, not only to ensure that legislation and regulation do not needlessly impede genetic research, but also to advance a more cooperative, responsibility-based social response to the genetic revolution.
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Key Terms

  • genetic information
  • health insurance
  • medical records
  • protect research
  • family planning

  • medical record
  • genetic database
  • genetic revolution
  • denied access
  • genetic data

  • kenyon suggested
  • genetic testing
  • david korn
  • genetic profile
  • prevent insurers

  • insurance raises
  • responsible privacy
  • planning counselors
  • providing affordable
  • develop entirely

  • conceal genetic
  • assume enormous
  • various institutions
  • privacy measures
  • regulatory arenas

  • lung compensation
  • proximate time
  • intensifying debate
  • hospital staffs
  • biomedical institutions


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