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Why This, Why Now?
As has been discussed in previous posts, health-related information and the use of information technology to help people in the medical care ecosystem better communicate, collaborate, and transact is expected to change dramatically over the next decade. While we expect significant benefits from the use of genetics to personalize and improve treatment and prevention, there are also going to be opportunities for all stakeholders to improve the management of such records: for security, privacy, and to help protect such information from inappropriate use.
We believe there is ample reason to plan ahead and develop policies and practices that appropriately balance the beneficial use of such information with respect for individual preferences and protection against the harmful use of such data. That means that public policy, private-sector leadership and individuals must work together to create a non-discriminatory environment that is needed to enable continued advances in healthcare and medicine.
Already, 30-plus state legislatures in the U.S., as well as the U.S. Congress, are considering the enactment of Federal genetic non-discrimination legislation, and other countries have already enacted such laws. Without such legal protection, leaders in the genetic sciences and the medical community are rightly concerned that individuals may forego genetic testing in light of uncertainties as to how their information may be used, particularly by their employers.
What Does It Mean?
IBM's involvement in the Genographic Project, the Human Genome initiative, bio-banking, and other information-based medicine frontiers all clearly revealed the need for clarity in this emerging and important area of science. As a fourteen-year IBM employee, it provides me great comfort to know that the company is formally indicating that it will not solicit or have routine access to any genetic tests I may have undergone.
While I recognize and applaud the tremendous progress that scientific and medical communities have made over the past decade in decoding and mapping the Human Genome, and I have no doubt this progress is already presenting significant opportunity for positive medical enhancements -- often in the form of preventative care that can treat diseases before the symptoms of such conditions have even appeared -- the potential for abuse of such information by employers and others is considerable.
The confidence that such genetic privacy policies can create for the protection of personal health information should, if applied properly, in turn create confidence in the amazing therapeutic opportunities that genetic medicine can provide. To my mind, that is the best way forward, and I am glad to see the company I work for have to taken this important and noteworthy step.