The Institute for Science, Law and Technology (ISLAT) is part of the multi-disciplinary Center for Diabetes Research and Policy at IIT that analyzes the implications of medical technologies and social policies in the diabetes context.
The prevention, diagnosis and treatment of diabetes and research into diagnostics and treatment raises social and legal issues. According to Family Medicine, an estimated half the diabetes patients who are treated in primary care do not receive appropriate care. Recent diabetes research studies involving experimentation on people have been shut down due to high death rates or other adverse results. Researchers who want to undertake diabetes research may be prohibited because other researchers or companies own patents on human genes related to diabetes and insulin and use their patent rights to forbid anyone else from doing research involving those genes. A state law in New York mandates that people with diabetes be reported to a diabetes registry, yet might not adequately protect people’s privacy.
Lori Andrews speaking at University of Illinois
Assuring people’s access to appropriate services and healthcare; preventing discrimination against people who have diabetes, a predisposition to diabetes, or family members with diabetes; and assessing the challenges of bringing new diabetes-related technologies through the government approval process while protecting the rights of people who participate in human research are all policy issues that must be addressed in order to effectively combat the diabetes epidemic.
Current projects span the areas of human research, intellectual property, and genetic testing and include:
- Legal Issues for People with Diabetes Across the Lifespan
- Draft Policies for Institutions and the State and Federal Governments
- Biobanks and Tissue Donation Issues
- Current Human Research Policies—Federal Regulations and State Laws—and Gaps in Human Research Protections
- Informed Consent Issues Raised During Diagnosis and Treatment of Diabetes
- Impact of Intellectual Property Laws on Research
- Effects of Over-the-Counter Marketing to Patients on Diagnosis, Prevention, and Treatment
- Conflicts of Interest in Research and Medicine
Some states have passed legislation that may affect patients’ privacy rights, such as in New York, where laboratories are required to report patients’ positive diabetes test results and identities to public health agencies. IIT Chicago-Kent College of Law Dean Harold Krent and the 2007 Honors Scholar students conducted a study about New York’s mandatory diabetes registry. The 2006 New York law was the first mandatory registry of individuals’ medical data for the purpose of monitoring the effectiveness of treatment for a noninfectious disease. The scholars researched the legal and ethical ramifications of importing a registration model for infectious diseases to other illnesses. The students evaluated risks for disclosure of the individuals’ private information, the dangers of secondary use of registry information, and implications for insurance coverage, employment discrimination, and physicians’ liability. The results of the research and analysis were presented to public health students at the University of Illinois at Chicago and published in a health law journal. The citation to this publication and a link to an online version are provided below.
Harold Krent, “Whose Business is Your Pancreas? Potential Privacy Problems in New York City’s Mandatory Diabetes Registry,” 17 Annals of Health Law 1 (2008) (with N. Gingo et al.). (pdf)