Genetic Alliance strives to harmonize individualized privacy needs with appropriate transfer and use of health information. The guiding principle for our work is to allow for the application of personalized definitions of privacy that maximize consumer engagement in healthcare and facilitate systemic efficacy through the promotion of trust.

Individual definitions of privacy and confidentiality are unique and complex: age, ethnicity, work, lifestyle, and/or community may influence their meaning. As consumers take on an increasingly empowered role in their healthcare, there is a need for individualizing privacy options in personalized care. Genetic Alliance recognizes the unique but challenging intersection of privacy and public policy, particularly as pertaining to the right to privacy, ownership of health information, potential for discrimination, sale of personal health information, and the role and effectiveness of informed consent in protecting privacy.

Privacy is a common thread through our work in the genetics and healthcare systems. We see it impacting access to genetic testing and services, newborn screening, biobanks and registries, informed consent, and genetic discrimination, to name a few. Important questions continue to arise, and we are committed to involving all stakeholders to elucidate answers:

• What constitutes use and misuse of genetic information?
• How do you preserve innovation in research while protecting privacy?
• What is the best way to engage patients in informed decision-making about uses of their health information?
• How should storage and use of residual blood spots from newborn screening be handled?
• How do you optimize the use of registries and biobank samples to balance privacy and access?

We recognize that this is not an all-inclusive list, and continue to encourage stakeholder participation at every level.

Comments to HHS HITECH Privacy and Security Modifications

We will continue to update this page to reflect our process and activities.