Your Medical Privacy (tissue issues)

When dealing with the subject of technology and privacy there is a tendency for people to go straight to innovations specifically created to aid or violate privacy. If you are talking about technology and medicine typically the discussion will not venture far from "the changes technology has brought about to save lives." Privacy in the context of medicine is seldom dealt with. However, when the subject does arrive it mainly focuses on doctor patient confidentiality. This post will delve into how medical technology has altered privacy when it comes to health.

What's Taking Place Now
Let's start with one important revelation. Doctors do not have to ask or tell you when they use you or your records in medical research. By "you" I am referring to any cells or body parts no longer a part of you. In medical research on a human beings, there must be consent, as The Nuremberg Code clearly states. However, anything you've had removed (tonsils, kidneys, tumors, blood, etc) is up for grabs to the medical community. No they do not have to ask, no they do not have to tell you. This occurs more then you realize, take the most famous cell growth ever cultivated, HeLa.

In nearly all important medical innovations from the Polio Vaccine to HIV research HeLa was there. HeLa was the first immortal cell cultivation, meaning it was the first cell culture that would keep growing. It has been the means by which science has come up with countless cures and the cell used in hundreds of thousands of vital research projects, that has extended and improved the quality of human life. The most astonishing part of HeLa's legacy isn't the medical advance gained, it's how the HeLa cells were initially acquired. They were taken from Henrieta Lacks while she was at John Hopkins medical center receiving treatment for cervical cancer in 1951. Without her or her families knowledge.

"Today most Americans have their tissue on file somewhere" (pg. 315). Exactly how many of us have our tissues on file? "A conservative estimate from the tissue collections described in this book is that more than 307 million specimens from more than 178 million cases are stored in the United States, accumulating at a rate of more than 20 million per year." This study was done in 1999. If the rate has continued as expected, that means that over 220,000,000 of us have our tissues on file. They can be stored anywhere from the hospital to FBI data bases. The moral of the story is, even when technology is developed for good it is important to pay attention to your rights and privacy. Blind trust has never served any good.

It is a little late to say "stop using tissue samples like this and get rid of them." Tissue cells gathered in this manner is the main means by which science is able to conduct research. The more samples the better the understanding and medicine theoretically. Obviously one should be cautious of anything like this. There exists no legal ruling in regards to ownership rights over cells or surgically removed parts. As Rebecca Skloot says in The Immortal Life of Henrieta Lacks, "there are, essentially, two issues to deal with: consent and money" (pg. 317).

Consent
With most tissue research consent is not required because it is not federally funded (thus excluding it from federally imposed standards that exist) and does not entail direct contact between the researcher and the donor. Two main issues arise when looking at consent, should donors have control over what research is conducted and who has access to it?

Money
Of course tissues will be commercialized, medicine is a commercial industry. The question is how do you deal with the "individual." Compensating patients will in all likelihood lead to profit seeking habits. Although, currently everyone involved besides the donor (typically) makes a profit. Ownership over tissue and patents are erupting everywhere. Institutions and companies and even individual are patenting certain genes creating a monopoly over all research that is conducted involving any of the patented genes. Not only does it inhibit research but it inhibits testing for those patented diseases on patients. Clearly the commercial aspects have truly limited research and treatment of disease. The medical community is unsure as to how to best handle this, as profit is what drives the research in the first place. Should profit be mentioned to a patient before gathering the sample?

How it Should Be (personal opinion)
There MUST be consent. At some point the donor needs to be made aware of what is taking place and the possible ramifications. Legislation needs to be passed creating laws to protect patient rights and enforce consent. As for how to handle the money aspect I'm less decisive. Though the idea of a certain percentage of profits made from tissue samples being placed into funds benefiting the public that the tissue originated from is appealing.