Quick futuro-philosophical question: Will we reach a point where everything is patented?
…what kinds of gestures can even be patented?
Some things clearly belong to the public domain. Gestures, colors, human body material, folk remedies, and phrases like “put first things first” do not belong to anyone, and nobody should be able to claim legal ownership of them.
But the question of ownership is touchier than it seems. Consider the following:
The family of Henrietta Lacks is finally getting a say in how researchers can use her cells, six decades after her fatal cervical tumour spawned the HeLa cell line. There is little doubt that the controversy over the case contributed to the decision by the US National Institutes of Health to consult her relatives about the future use of her genome information (see pages 132 and 141). But people who donate samples to biomedical research today are unlikely to find out what happens to their material.
Standards of informed consent have improved since scientists established HeLa without approval from Lacks or her family. But research participants still have little control over how their tissues and data are used, and often never hear from the researchers again.
Increasingly, volunteers are asked to give ‘broad consent’ for samples and data to be used in studies that may not have been conceived at the time of donation. In exchange, donors should have the option to learn how their specimens are being used — and even to withdraw consent.
This already happens informally in some studies, but digital technologies could allow researchers to keep patients updated. Imagine the thrill of giving a sample, logging on to a secure website years later and discovering that your specimen helped to develop a skin-cancer treatment.
This continued contact with donors raises issues — not least how to ensure their anonymity. But researchers must also be honest and tell donors that privacy cannot be guaranteed, particularly for highly identifiable genomic information. Some volunteers and their families are rightly proud that they are directly contributing to research. Funders and researchers should give more of them the chance to stay involved.
Now consider the arguments in the “comments” section:
john werneken • 2013-08-08 04:06 AM
Why were the family concerns considered worth blocking research over? I find it unbelievable that an individual would be thought to “own” their dna.
S J • 2013-08-21 08:04 PM
John, you are not actually believing what you wrote, right? Your comment must be only meant to stir controversy (or advance the debate, depending on the viewpoint). Well, if you mean owning their DNA as in owning the actual physical DNA molecules: They were synthesized by their body and are an integral part of it. I do believe they do own those. I am actually rather glad that I live in a country where my body parts belong to me and cannot be harvested without my approval even if this can be viewed as “blocking the research” by some. You are however most likely talking about the information content of one’s DNA. Since it does contain family-related private medical information and we are talking about publishing it, I believe the individuals do own the rights to that information and should have the right to chose what can be done with it. You would not think it is acceptable for your neighbor to publish online pictures of your family, despite: 1. being only a bunch of 1’s and 0’s on the hard drive of a server and not the actual individuals. 2. not being obviously offensive. 3. being captured using the light that the individuals choose to reflect in their everyday life without involving physical contact. 4. the fact it will possibly not have any consequences for the actual individuals in the photographs. 5. the fact that your neighbor thinks it is OK. Many people are just fine with posting their pictures online, but it remains a personal decision. The only difference with posting DNA data is that *you* personally can easily open a digital photograph but you would struggle reading genetic data. But the discussion is not only about your skills. I believe it is up to the Lacks family to decide if they are willing to give up a small portion of privacy for a greater good. They should of course take into account how tremendously useful this cell line has been in improving people’s lives. But ultimately, the choice to make this sacrifice should come down to them. We can only ask for that favor.
Byard Pidgeon • 2013-08-14 04:42 AM
If an individual cannot “own” their DNA, then anyone using that DNA to manufacture something should not “own” that product, either.
Robert Gertz • 2013-08-13 08:14 PM
What a disturbing comment. I’ve worked with HeLa cells and they’ve been incredibly useful but the notion that family concerns in such cases should be brushed aside?…Highly unethical to my thinking. And “unbelievable that an individual would be thought to ‘own’ their dna”? Well, if Ventor can try to patent sequences, surely the individual should be considered as having some say and stake. As for other comments hinting that the family’s concerns are either trivial or interested, financially…Every researcher can be accused of wishing to put his or her research first, in part for grand and noble reasons, but in part for career success and in the case of patenting sequences, even financial gain. I see no loss to Science in pausing to consider the rights and wishes of individuals and families in these matters. A balance of course is required but to suggest the families and individuals are not driven by motives as noble and fair as the researchers is unfair and unethical. Researchers are human…They seek fame, success, even yes, financial gain. A balance between our desires and those of the human (and animal) subjects employed in our research is vital.
The DNA in question is viewed as very useful. Do we owe our bodies to the larger community? It’s a serious question:
But the descendants of Henrietta Lacks — whose cervical tumour gave rise to HeLa cells — saw otherwise, as did other scientists and bioethicists. They have criticized the decision to publish the sequence, noting that the HeLa cell line was established without Lacks’s consent (around the time she died in 1951) and that aspects of what Steinmetz and his team have published may disclose genetic traits borne by surviving family members….
…The donors of most other human cell lines are anonymous. But in this case, “hundreds of thousands — millions of people — know that HeLa is derived from cells from Henrietta Lacks”, Clayton says. “I think that really made it at best imprudent to publish the genome of those cells on the web without talking with anybody first.”
…The HeLa controversy holds some general lessons as well, researchers say. Many cell lines propagated in labs were established without donor consent, including, possibly, some embryonic stem-cell lines….
…Applied more generally, such a claim raises important questions for genome research — such as whether family members have the right to override the wishes of individuals who choose to share their genetic data, and whether scientists are obligated to disclose a person’s genetic information, such as disease risk, to family members.
Meanwhile, we don’t necessarily own our body, but Mattel owns “Barbie Pink” (because apparently that shade of pink didn’t exist before Mattel created it?)
And while we are considered criminals if we use some corporation’s intellectual property in the wrong way, they feel perfectly free to appropriate, trade, commodify, buy/sell and transfer our personal information – including our body, our facial likeness, and our thoughts – in whatever way they can, with profit as self-evident justification.
When do we prioritize individual rights, and when do our own individual rights and interests deserve protection?
We need better guidelines.