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Conference Recap: Audience Comments on the Forum on Population Testing for BRCA

Audience members were invited to submit written questions and comments during the population testing forum. Here are some of the ideas and concerns they raised:

  • Why not compromise and test individuals who have at least 1 family member with cancer, rather than needing at least 2-3 [family members] for genetic testing to be recommended and covered by insurance?
  • How can we even identify the prevalence of these (BRCA) mutations and the resulting disease without large-scale population testing?
  • If Myriad shared test results that they were allowed to withhold, wouldn't we be further along in hereditary cancer research? Doesn't Myriad have information that would help further this effort?
  • Population testing has potentially good value for awareness and prevention, but how would it be protected completely against future harm: to screen out individuals as high risk by insurance and employers, among others? We know that all databases are hackable.
  • Maybe population testing would be a good idea eventually. But for now, maybe we need an intermediate step, such as health literacy campaigns about what genetic testing does and does not do. There is an obvious need for more genetic counselors and more training for frontline health care providers such as OB/GYNs, primary care physicians, and nurse practitioners.
  • When so many patients with no family history inherited their mutation from their father, isn't universal screening an issue of basic public health?


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