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The federal government has proposed changes to the Common Rule, a law designed to protect the privacy and well-being of people who participate in scientific research.
Currently, the law allows your biological samples a€” think leftover blood from a test at the doctor's office a€” to be stored and used for research indefinitely as long as the sample is stripped of your personal information. Rebecca Skloot, author of "The Immortal Life of Henrietta Lacks," wrote a New York Times op-edA calling attention to the proposed changes. But as a member of the public, whose blood or cells could potentially be used in research, you have a right to weigh in.


Researchers have shown that today, they can use genetic testing and information on the internet, for example, to re-identify samples that were supposed to be anonymous.
Consent "could be obtained using a 'broad' consent form in which a person would give consent to future unspecified research uses,"A the USA Department of Health & Human Services (HHS) explainsA on its website. Some pointed out that the changes were extremely complicated and raised too many questions to push forward on implementation without further clarification. She pointed out that people are sharply divided on the benefits and problemsA of the potential update to the Common Rule, and whether any potential research slowdown is a fair or even necessary trade-off.


And ofA course, any issue surrounding privacy, genetic testing, scientific discoveries, and the "future of human health," as Skloot puts it, is bound to be controversial. They believe tissue research is important, but they wish theya€™d been asked permission from the start, to avoid difficulties that followed: the shock of learning they were part of research, debates over who controlled samples, questions over profits.



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