There are always trade-offs when it comes to privacy, and when it comes to protecting personal health information, the debate often hits close to home. While most of us think only in terms of protecting our own medical privacy, laws like HIPAA, meant to strengthen privacy protections, can have broad implications on health research to develop new and better treatments. This month's lead story examines a recent study led by Dr. Alan Westin that takes a deeper look at the societal and marketplace costs incurred when people hesitate to share their health data for research purposes -- even with appropriate safeguards in place -- over worries about discrimination over a health condition.
IBM, the company featured in our second story, understands the ethical value of protecting health data. In 2005, IBM became the first company to announce that it would not use genetic information in employment decisions. But, it also recognizes that commitment to protecting health and genetic data has a strategic value -- it fosters the trust necessary for business innovations in the area of personalized medicine.
In today's atmosphere of mistrust over the confidentiality of personal health information -- especially with the push toward electronic health records -- is the protection of non-personally identifiable health information at the expense of potential medical breakthroughs worth the cost? Email me your thoughts.
J. Trevor Hughes, CIPP
Executive Director, IAPP
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