What’s Yours Is Actually Mine


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.

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  1. Tissue culture: unlocking the mysteries of viruses and cancer

    Tissue culture methods have played a major part in the work of more than a third of the winners of the Nobel prize for medicine since 1953 and have made gene therapy and stem cell research possible.

    Tissue culture entered mainstream medicine in 1949 when the US scientists John Enders, Thomas Weller, and Frederick Robbins reported that they had grown polio virus in cultured human embryonic skin and muscle cells. This achievement soon led to methods for measuring immunity to polio and to the award of the Nobel prize for medicine to the three scientists in 1953.

    Fifty years on we are on the brink of eradicating polio by using vaccines derived from cell cultures, and cells are grown on an industrial scale to yield vaccines, antibodies, and other biological products such as recombinant factor VIII for hemophilia.

    In his Nobel lecture Enders described the technical difficulties encountered before the second world war in efforts to grow viruses in culture and how, after the war, antibiotics were used to keep bacterial contamination at bay. The new accessibility of tissue culture methods ushered in the golden era of virus discovery.

    It also revived many previously unattainable ambitions in medical science, having a crucial role in no fewer than 18 of the 52 subsequent Nobel prize winning discoveries, including RNA interference (the 2006 winner), the nature of oncogenes (1989), growth factors (1986), monoclonal antibodies (1984), tumor viruses (1975), and virus genetics (1965).

    An Old Dream is Realized

    Although short term survival outside the body of the beating heart and twitching muscle was known to the ancients, serious attempts to achieve lengthy tissue survival in vitro were possible only in the second half of the 19th century.

    Among the pioneers were embryologists, who studied the early development of amphibian and avian eggs and began to experiment on “organizers,” soluble messengers that directed organ development. With the advent of cell culture the nature of these growth factors could be elucidated. Modern stem cell research is the most exciting and controversial descendent of this work.

    Surgeons had dreamt of organ transplantation since the Middle Ages. In the 1920s and 1930s Alexis Carrel, a French surgeon working at the Rockefeller Institute in New York, collaborated with the aviator Charles Lindberg to overcome the technical challenges of organ perfusion. Their tissue survival studies attracted enormous public interest, fuelled by newspaper reports such as “birthday” notices for one culture of chick embryo cardiac muscle cells.

    Carrel’s earlier Nobel prize for work on surgical anastomoses and his philosophical writings added to the mystique of cell culture, which was reinforced by the extreme precautions needed against contamination.

    Only the most determined groups succeeded. Before the second world war Thomas Strangeways and Honor Fell in Cambridge used cell culture as part of their multidisciplinary approach to bone and joint disease, paving the way for the recognition of tissue specific markers, which are now so widely used in diagnostic pathology.

    After the second world war the serial subculture of cells was achieved through the use of trypsin (a serine protease found in the digestive system where it breaks down proteins) to produce single cell suspensions, antibiotics to control contamination, and better growth media, such as the famous “199” with its 64 ingredients.

    The finite number of divisions achievable in the culture of normal cells contrasted with the “immortality” of cancer cell lines. HeLa cell, the most famous of these, was derived from the cervical cancer that killed Henrietta Lacks in 1951. Continuous lines were used to develop convenient in vitro methods for testing the efficacy of potential anticancer drugs and the carcinogenic effects of drugs and chemicals.

    The demonstration of integrated viral genes in many tumours and of similar homologues in normal cells revolutionized concepts of growth regulation. The discovery of mutations in these homologues (the cellular “oncogenes”) in cancer tissues and in the normal cells of family members with an inherited risk of cancer had applications in cancer diagnosis and screening.

    By the 1960s, cell culture technology was well established in virology and cancer research. The time was right for the interaction between cell biology and genetics that gave birth to molecular biology.

    Study of the chromosomes of dividing cultured cells spawned the new discipline of cytogenetics, while work on gene expression began to explain the mechanisms involved in differentiation, which could now be observed in vitro. This ultimately produced skin cultures that could be used for grafting, but its more profound consequences resulted from elucidating the functions of T cells as they proliferated in vitro after stimulation with antigens.

    Exquisitely Specific Antibodies

    Fusing cultured benign and malignant cells provided important insight into the control of cell division, and the technique was spectacularly exploited to generate “hybridomas” (fused cells) between myeloma cells and B cells to produce monoclonal antibodies. Immortalized cell lines now provided a potentially unlimited source of antibodies of exquisite specificity for enzyme linked immunosorbent assay and radioimmunoassay, and monoclonal antibodies are now being used in treatment.

    The ability to transfect (introducing foreign DNA into a cell) cultured cells with DNA gene sequences has allowed us to assign functions to different genes and understand the mechanisms that activate or redress their function. Gene therapy has yet to fulfil its promise, but it may ultimately overtake the many other medical applications of cell culture.

    Without cell culture we would lack vaccines against measles, mumps, and rubella and would still be dependent on much more expensive and reactogenic vaccines for polio, rabies, and yellow fever.

    We would be unable to karyotype (standardized arrangement of all the chromosomes of a cell) patients with suspected genetic disorders or to perform in vitro fertilization.

    Antibodies for diagnostic or therapeutic use would be derived from immunization of whole animals, with much greater variation in titre (the unit in which the analytical detection of many substances is expressed) and specificity (a measure of a test’s effectiveness) than products derived from cells.

    Our concepts of growth, differentiation, biological ageing, and malignant transformation would be simplistic; and gene therapy and the use of stem cells to repopulate damaged organs or clone individuals would be beyond imagination.

    Source: Yvonne Cossart, Bosch professor of infectious diseases, Department of Infectious Diseases and Immunology, University of Sydney, Australia BMJ 2007; 334 : s18 doi: 10.1136/bmj.39034.719942.94