Ethical considerations of genomic-based personalized medicine

Along with many potential benefits, genomic-based personalized medicine brings important legal and ethical questions:

• Who should have access to a person’s genetic profile? Employers? The government? Life insurance companies? Health insurers?
• How will we protect genetic privacy and prevent genetic discrimination in the workplace and in our health care?
• And how will we as consumers use genetic information to our benefit?

Questions like these loom large as the genomic revolution accelerates, but many of them have been addressed by state and federal legislation. In 2008 Congress overwhelmingly approved the Genetic Information Nondiscrimination Act (GINA), and President Bush signed it into law.

GINA prohibits your health insurer from requesting, requiring or using your genetic information to make decisions about your eligibility for health insurance or your health insurance premium, contribution amounts or coverage terms. It also prohibits your employer from using your genetic information to make decisions about hiring, firing, promotion, pay, privileges or terms, or to limit, segregate, classify or otherwise mistreat you.

The Jackson Laboratory is committed to giving policy makers, legislators, ethicists, educators and consumers the scientific information needed to address the societal issues of genomic-based personalized medicine.

And in our clinical diagnostics operations, which analyze human DNA samples, we are dedicated to patient privacy. We follow detailed policies and procedures for protecting the confidentiality of individuals’ lab test results and other protected health Information, in full compliance with the privacy and security rules of the Health Insurance Portability and Accountability Act of 1996 (known as HIPAA).

See our official policy on human gene editing, and our notice of privacy practices, which articulates our commitment to protecting health information.