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APHA Scientific Session and Event Listing

Michele Goodwin, JD, LLM, College of Law, DePaul University, 25 East Jackson Boulevard, Chicago, IL 60604, 312-362-8127, mgoodwin@depaul.edu

Biotechnology outpaces the law in most Western nations. State, federal, and municipal governments have been slow to respond to the ways that genetic breakthroughs will affect populations, including those who are most economically and politically vulnerable. Critical questions must be addressed in this area, including those that scrutinize the proper role of the law. What rights do individuals have to the protection of their genetic data? Are there any property interests in our own data? What repercussions, criminal or civil, exist for the misuse of data? This presentation shall examine the intersections of biotechnology and the law, focusing specifically on privacy, ethics and the law. This paper examines the future of genetic privacy by placing it in contexts with several spheres of privacy engagement, including informed consent, clinical trials, patient-physician trust, and treatment of vulnerable subjects and the criminal justice system. These issues stand alone, but also intersect, not only for vulnerable populations, such as the low income, immigrants, the elderly, racial minorities, but for our global populations. This talk shall examine both cases and policies involving the use and sometimes abuse of genetic information. The paper examines how the poor and particularly racial minorities are at risk for abuse of genetic disclosures. The paper concludes by offering policy recommendations that balance the drive for biotechnological advancement, including the use of genetic data for proper public purposes with need to protect individual autonomy and preserve fiduciary relationships.

Learning Objectives: At the conclusion of the session, the participant (learner) in this session will be able to

• Identify the legal definition of informed consent and scrutinize that in context with contemporary medical practice and genetic data collection.
• Evaluate the validity and purposefulness of collecting data connected to vulnerable populations, including racial minorities and children.
• Provide an informed analysis about what rights individuals have to the protection of their genetic data.
• Discuss the repercussions, criminal or civil, for the misuse of data.

Keywords: Privacy, Minorities

Presenting author's disclosure statement:

Any relevant financial relationships? No