Caucus co-chairmen, Senators Christopher Dodd (D-CT) and Tim Hutchinson (R-AR) emphasized the necessity of creating laws that keep up with technology advancements, especially in the areas of workplace and health care discrimination. Dodd urged his fellow Congressmen and women to act quickly to safeguard Americans against genetic discrimination by supporting S.318, the Nondiscrimination in Health Insurance and Employment Act. This legislation would outlaw discrimination based on genetic information both in the workplace and in health insurance. Hutchinson acknowledged that the potential of the biotechnology industry brings to light a number of pressing questions regarding the protection of an individual's genetic information.
Dr. Francis Collins, Director of the National Human Genome Research Institute at the National Institutes of Health, testified as a witness at the hearing. "The public is deeply fascinated with this research, but they are very concerned that it will be used against them in health care or in the workplace," he said.
Judi Hirshfield-Bartek from the National Breast Cancer Coalition urged the caucus to implement privacy protections for those wishing to participate in clinical trials. She said that without this protection, many people, such as those at high risk for developing breast cancer, do not participate in medical trials or have genetic testing done because they fear disclosure of confidential results to employers and/or health insurers.
As a representative of the biotechnology industry, Gualberto Ruano, CEO of Genaissance Pharmaceuticals, Inc., spoke of the positive ways in which genetics has reinvented the field of medicine. He envisions a personalized health care system, tailored for each individual's genetic makeup (for more go to Pharmacogenetics). Ruano also spoke of confidentiality concerns regarding medical records and the ways in which companies such as his are taking steps to ensure confidential information remains confidential. Issues of patenting the human genome as well as licensing concerns were also addressed at the hearing as further complications in biotechnology and genetic research.
Thank you to Susannah Baruch from the Coalition for Genetic Fairness for providing this update.