Patient privacy advocates are vowing to impress upon senators the dangers of using personal health data for biomedical research without requiring patient consent, reports ihealthbeat.com.
Image Credit: Nikoloz Jorjikashvili (Flickr)
The Senate Health, Education, Labor and Pensions Committee is drafting its version of the 21st Century Cures Act, and patient privacy advocates have concerns that their changes to the Act have altered the privacy rule in a way that could undermine the trust between patients and their doctors.
Currently, the Health Insurance Portability and Accountability Act (HIPAA) permits health care providers, health plans and academic medical centers to share information without patient authorization. The House version of the Cures Act will also give research entities involved in biomedical research access to patient data without their consent.
Thai attorneys Chaninat and Leeds have decades of experience in a wide range of legal issues including criminal law, family law and US visa law.
Those supporting the Cures Act argue that the legislation will enable scientists to develop new medical treatments faster, but patient privacy advocates worry that such research will use unauthorized data without patient consent.
Deborah Peel, founder of Patient Privacy Rights, says: “This is a slippery slope […] This bill has no safeguards for patients’ rights at all, and it eliminates our long-standing human and civil rights to give consent for the use of sensitive information about our minds and bodies, which will be used for research that we don’t even know about.”
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This rings bells of recognition to the recent Planned Parenthood scandal which has allegedly been selling off aborted fetal parts without written consent and deceiving the patients of the full details.
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