Imagine someone you barely knew came to your neighborhood and took a picture of you playing with your kids at the park and then turned around and used it in an advertisement to promote a product they developed. How would you feel? Presumably you would be highly perturbed. You might even want to sue them for invasion of privacy. Most likely your case would turn on the violation of your right to publicity, which is, according to the Citizen Media Law Project (CMLP): the right of a person to control and make money from the commercial use of his or her identity. It probably wasn’t illegal for that person to take your picture since you were in a public place, but their use of it in a money-making endeavor changes the rules.
CMLP goes on to say that if someone “sues you for interfering with that right [of publicity]” they “generally must show that you used his or her name or likeness for a commercial purpose. This ordinarily means using the plaintiff’s name or likeness in advertising or promoting your goods or services, or placing the plaintiff’s name or likeness on or in products or services you sell to the public.” In order to be a protected use in that advertising scenario, the photographer would have had to get your permission to use the photograph for that purpose.
I bring this up because I got to thinking about the topic after finishing a terrific book called The Immortal Life of Henrietta Lacks by Rebecca Skloot (Amazon’s Number 1 book of 2010). The book is about a poor black woman from Baltimore who, in the 1950’s, has cancerous tissue removed from her body and, while she goes on to die from the cancer itself, the harvested tissue lives on in perpetuity, becoming the first “immortal” human cell line used in medical research, first by Johns Hopkins and later by the worldwide scientific community.
Henrietta’s cells, called the HeLa cell line, were removed from her with her permission (of course she wanted the cancer out), but the subsequent use of her tissue for research purpose occurred without her permission. And now, more than 60 years later, her cells are still in wide use in scientific laboratories worldwide, producing literally billions of dollars in revenues for those who either packaged and sold the cells for commercial use or used the cells themselves to develop drugs and diagnostics. If that ain’t using someone’s likeness in a product or service you sell to the public, I don’t know what is. And yet Ms. Lack’s heirs were never even informed about the tissue repurposing and they certainly never received a dime in recompense. In fact, according to author Skloot, the family members were contacted to provide additional medical tissue samples to augment the research record and weren’t even told that was the purpose of that exercise. They are understandably a bit perturbed.
One would think that this sort of thing couldn’t happen in 2011. And yet, it apparently happens all the time. The book was a real eye-opener, not so much for the story, which was great, but for the issues it raises about our current medical/scientific system of consents and lack thereof. Today, informed consent is mandatory in all 50 states in order for anyone to remove tissue from your body, but once the tissue is outside your body, all bets are pretty much off and the “right of publicity” doctrine has not been interpreted to apply. In other words, no one can sell your picture without your permission, but they can sell what is essentially a picture of your DNA whether you like it or not. If someone wants to follow you around the gym locker room and pick up your hair and nail clippings and put them on ebay (ew, gross), they are welcome to do so without letting you know (stalker or entrepreneur? you be the judge).
I find this a really interesting inconsistency in the law and one that has pretty significant medical ramifications in a world where people can be and are routinely identified from their DNA.
Back in the 1950’s when Henrietta Lacks fell ill, informed consent was a recently evolved concept that resulted from the Nuremburg trials, where it was revealed that medical experimentation had been performed on civilians without their agreement. Informed consent is the doctrine that says that medical personnel must not only tell you what they are going to do to you before they do it (including the potential benefits, risks and alternatives), but requires that the person getting your signature reasonably believes you understand what they are telling you. But most states’ informed consent rules do not yet require that you be informed about what happens to the tissue or blood samples after they leave your body. There have been a number of court cases around this issue (notably one in Texas where the state was compiling a statewide DNA database of all babies born in the state from their routine newborn blood panel).
So what? You might say. So my nail clippings or tooth scrapings achieve immortality; why should I care? It’s in many ways a good thing that there is uncontested tissue out there for research or new cures could not come to reality. The interesting ethical dilemma is what happens when and if someone uses that tissue for a purpose that you might not like, such as tracking you down because your DNA was present at a particular location, like a store or restaurant. Sounds farfetched, perhaps, but lots of people are already freaked out that the Internet knows where you have searched and can compile an effective consumer picture of your consumption habits.
How would you feel if there were both massive DNA libraries out there of the citizenry (which there are) as well as rapid DNA readers that could track your personal shopping habits (maybe trigger an alert when you enter a store)? I’m talking about a virtual blood hound that knows you went to Baskin Robbins when you said you were going to the gym or knows that you made not one but five trips to Nordstrom’s shoe department when you told your husband you were going for a walk? Sounds very futuristic, but it’s not so crazy when you think about the amazing advancements in DNA testing that have occurred over the last 10 years, coupled with the burgeoning industry around personalizing the marketing field. Personalized medicine, meet personalized shopping. Yikes.
In the past the big fear about widely available DNA samples was a concern that you could be discriminated against for what is in your genes. To a certain extent this has become illegal through the passage of the 2008 Genetic Information Nondiscrimination Act, which prohibits discrimination when it comes to employment or health insurance. But what about when it comes to life insurance? college admission? adoption? If you don’t get to control your tissue for seemingly altruistic purposes (true science to benefit mankind), what makes you think you can control it when it comes to nefarious purposes? I don’t mean to get all black helicopter on you, but it does give one pause. At the simplest level, if someone develops a highly profitable product that could not have been developed without your personal bodily tissue, shouldn’t you stand to gain at least through some sort of royalty in the same way you would if your picture was on the package?
Anyway, I really hadn’t contemplated these issues at the level that the Henrietta Lacks book made me think about them and it is always a pleasure to read something that makes you think about an old topic in a new way. If the internet has made it possible to self-publish, like WordPress does for this blog, no doubt there will be companies devoted to helping people self-promote their own tissue (I have actually already seen one such company with a business model very close to this). eBay meet eBod.
Lisa Suennen is a managing member of Psilos Group, co-headquartered in the Bay Area and New York City, The firm has funded and developed more than 38 innovative companies, including ActiveHealth, AngioScore, Click4Care, Definity Health, ExtendHealth and OmniGuide. Lisa blogs at Venture Valkyrie.