Magazine

Balancing Privacy and Biotechnology


Balancing individual privacy and the needs of society has always been a difficult issue. But as biotechnology keeps advancing, finding the right balance gets more and more difficult. The latest dilemma: the appropriate use of human tissue in medical research. More than 300 million samples of human tissue--everything from tumors to skin to hearts to hair--exist in labs across the country. If you've had a biopsy or an operation, your tissue is probably in a tissue bank.

Scientists say these tissue samples are essential to research to treat inherited disorders and diseases such as cancer. Scientists need them to figure out how genes function in human tissues. The only alternative is to do tests on humans themselves--not the best option.

But there's a problem: In order for researchers to take full advantage of a tissue sample, they need to know the medical history of the donor. That means a sample has to be coded to identify the patient. Your tissue may be under study right now without your knowledge. Federal guidelines requiring researchers to get informed consent do not necessarily apply to hospital labs testing for disease, nor do they cover privately financed biotech or pharmaceutical companies. Worse, there is nothing stopping researchers from selling the results of individual tissue samples to insurance companies or entering them on medical records for employers.

This isn't right. Privacy is essential to democracy. Taking it away, even for a worthy purpose, can't be allowed without an individual's permission. Informed consent must be required for all use of human tissue.


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