GENES WITH THE PERFECT FIT
"This drug is not for everyone, but it is for you."
-John C. Lechleiter, Ph.D.
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Issues: Ethical, Social, and Legal
As personalized medicine becomes more widely known, a variety of ethical, legal, and social issues have presented themselves. The availability of personal genome sequencing opens up the door to major concerns. Some questions to consider are:
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Who will have access to a person's genetic information?
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If a person finds out they are at risk for a genetic disease, are they violating their family member's privacy?
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Since 44 million people in the United States do not have healthcare insurance, how will personalized medicine be funded and conducted?
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Should it be available to everyone?
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Who will pay?
As of right now, insurance companies continue to pay and support patients' medical expenses for personalized medicine as they currently do in traditional healthcare. However, fourty-four million Americans do not have healthcare insurance, so paying for this new technology could become a major issue. This problem may result in the government interference or support for those who cannot afford insurance.
Who owns the data?
The immense amount of new data that personalized medicine requires opens up the door to ethical issues such as privacy, ownership, and access. The government has taken some measures to try and subdue worries. The HIPPA (Health Insurance Portability and Accountability Act) and the Affortable Care Act protect individual's personal health information. In 2008, the Genetic Information Nondiscrimination Act was passed, which prevents employers and health insurers from utilizing genetic information and family history. However, many people are still apprehensive about their personal genetic information being exposed or manipulated.
Scott T. Weiss, the scientific director at Partners HealthCare Center for Personalized Genetic Medicine at Harvard University stated,“This is confidential patient data,” he says. “It can be used for medical research, but it’s highly unlikely that your identity will be disclosed to some commercial third party in any identifiable way. Academic medical centers may partner with pharmaceutical companies, using their genomic data, but will do it in an anonymous way and only if the patient consents. The patient is going to be in control of what they do here, as they should be.”
Weiss is confident that personalized medicine will strictly protect patient confidentiality.
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