Industry, ethics, and general medicine

Charles MacKay, Ph.D. (Co-Chair) I Patricia D. Murphy, Ph.D. (Co-Chair) t has long been recognized that the new genetic knowledge has been accompanied by a number of challenges for which the public, Robert A. Smith, Ph.D. (Rapporteur) health care providers, and the health care industry are not well preLisa Bailey, M.D.* pared, and in which different parties may have different interests. It Jeff Boyd, Ph.D.* is important that issues related to quality assurance, patient rights Wylie Burke, M.D., Ph.D.* and confidentiality, and a balance between economic interests and Robert K. Gleeson, M.D.* safeguards for the public are resolved at the earliest opportunity. Randi Gould* Michael L. Moore, M.D.* Recommendations Karen Steinberg, Ph.D.* 1. The American Cancer Society should support clinical utility studies G. Fred Worsham, M.D.* and outcome benefit studies. 2. Providers of genetic testing should agree on a standardized decision tree for referral (a flowchart or algorithm). 3. High quality lab performance must be assured. Appropriate professional agencies should develop high standards of quality control to assure the accuracy of genetic information. These standards could be established as a voluntary accreditation program or as regulations. 4. There should not be direct marketing to the public for genetic testing. 5. The workgroup is concerned about privacy and the multiple potential routes to possible disclosure of genetic test results. Laboratories should only disclose information about genetic test results to the referring provider. Genetic information should be released to third parties only with the signed consent of the individual for each specific use. Patients should be fully informed about how genetic information results will and may be used. 6. Genetic information is important medical information that should be kept in the patient’s chart. The American Cancer Society should work with other organizations to protect the confidentiality of this information. * Workshop participant.