Rebecca Skloot’s Journey into the Life of Henrietta Lacks

Lori Andrews by Lori Andrews

In 1890 a man sold the rights to his body after death to the Royal Caroline Institute in Sweden for research purposes.  Later, he tried to return the money and cancel the contract.  In the subsequent lawsuit, the court held that he must turn his body over to the Institute and also ordered him to pay damages for diminishing the worth of his body by having two teeth removed.

Photo of Lori Andrews and Rebecca Skloot

Lori and Rebecca Skloot

Today, it would be an anathema for a person’s body to be used against his wishes or for a research subject not to be allowed to withdraw from a study.  In fact, the Uniform Anatomical Gift Act allows people to change their minds and withdraw a previous agreement to donate organs and tissue after their death and the Federal research regulations allow people to withdraw from studies without penalty or loss of benefits.  Yet the law is murky regarding research on a person’s tissue outside of his body and some modern doctors and researchers emulate the Royal Carolina Institute and stake their claims on materials from people’s bodies.

In 1951, a 31-year-old African-American woman, Henrietta Lacks, died of ovarian cancer.  Without the knowledge or consent of Lacks or her family, her tissue was taken and made into a cell line that has been extremely valuable for research and is still sold today.  In an interview in 1994, her husband said, “As far as them selling my wife’s cells without my knowledge and making a profit — I do not like that at all.  They are exploiting both of us.”
Body Bazaar Cover Image
Dorothy Nelkin and I wrote about Henrietta in our 2000 book, Body Bazaar: The Market for Human Tissue in the Biotechnology Age.  Over the past decade, journalist Rebecca Skloot probed more deeply.  In The Immortal Life of Henrietta Lacks, Skloot tells a moving story of how the unauthorized use of Henrietta’s cells (known to scientists as HeLa cells) provided the foundation for most modern medical discoveries.  I caught up with Rebecca Skloot on her whirlwind book tour when she spoke at the Northwestern Medical School.

Skloot-Book-CoverShe described how Henrietta’s cells formed the basis for much of the scientific enterprise across the world in the decades since her death.  Virtually every high school biology student, every medical student, and every vaccine maker has manipulated her cells.  While fortunes have been made on the foundation of the HeLa cells, her own children lacked access to education and basic health care.  In fact, when her children were contacted decades after her death by researchers wanting their tissue, they completely misunderstood what scientists meant by research on their mother’s cells.  They visualized their mother as still alive, in a cell, being researched upon.

But they are not the only people kept in the dark about tissue research.  How many people realize that their tissue is being used today without their knowledge and consent?  Over 282 million archived and identifiable pathological specimens from more than 176 million individuals are being stored in United States repositories.  Some specimens are anonymized or coded and not identified with specific individuals; others carry patient names or codes that allow personal identification.  Virtually everyone has his or her tissue “on file.”

Expanding markets have increased the value of this tissue, and institutions — hospitals, research laboratories, and the state and federal repositories that store tissue samples — find they possess a capital resource.  Medical centers have deals in place with biotech companies to do genetic research on their hospital patients’ tissue without the patients’ permission.

This lackadaisical approach to consent has recently been called in question.  A Native American group, the Havasupai, gave tissue to a scientist for research on diabetes.  Instead, the scientist undertook research about schizophrenia and in-breeding, which stigmatized the Havasupai, and research about geographical origins, which conflicted with the Havasupai’s religious beliefs.

When the researcher was challenged in federal court, the judge found that the Havasupai had asserted valid claims for intentional infliction of emotional distress, negligent infliction of emotional distress, civil rights violations, negligence and gross negligence.  In April 2010, the researcher’s university settled with the Havasupai, paying $700,000 to 41 members of the tribe for using their tissue without appropriate informed consent.

The attention being paid to Skloot’s excellent book and the good news of a settlement in the Havasupai case are spurring societal discussion about the use of tissue samples.  Clear laws and regulations are needed to assure that no one’s tissue is used without specific informed consent.

The specifics of Henrietta Lacks saga will soon be made into a movie, with Oprah as an executive producer.  But her story affects us all.  Hospitals, universities, research centers, and private depositories retain pathology samples and genetic data collected in the course of surgical procedures or research projects — a fact unknown to most patients.  New laws are needed to make sure we are not a nation of guinea pigs.

R.I.P. — Gene Patents and the Biotech Industry

Lori Andrews by Lori Andrews

Last Sunday’s 60 Minutes explained the logic behind a federal court decision invalidating patent claims related to the breast cancer genes.  A proponent of gene patents told 60 Minutes that patents were necessary to encourage people to find genes.  Elsewhere, interviewees have implied that invalidating gene patents will be the death knell of the biotech industry.

Lori and Morley Safer

Lori and Morley Safer

But wait a minute!  Patent law says you can only patent inventions, not products of nature.  No one invented a breast cancer gene; it exists in each of our bodies. So why do we have to pay a royalty fee for our doctor to look at any of our own genes?  It’s as if someone stole my car and then tried to lease it back to me.  If a court stopped car thieves, no one would shed a tear about the death knell of the car theft industry.

So I can’t get worked up about companies losing their gene patents.  Those companies have unjustly enriched themselves for years by claiming ownership over products of nature.  It’s as if a company patented air and charged a royalty each time we breathed.

Click here to watch the 60 Minutes interview with Lori.

Scientists were searching for and finding genes long before patents were available and there is no evidence that the grant of gene patents (as opposed to the patent on the gene sequencing machine) sped this search up. Researchers try to discover genes for a number of reasons –- to help mankind, to win a Nobel Prize, for academic advancement, and for professional status.  The fact that patents are not necessary for gene discovery and actually interfere with discovery is underscored by the fact that the professional organizations of geneticists — the people who discover genes—are the plaintiffs and amici who are urging that genes should not be patentable! In fact, in a study of American Society of Human Genetics members, 61% of those in industry, 78% of those in government, and 77% of academic scientists stated that they disapproved of patenting DNA.

Further, patents on genes actually stifle innovation. Once a gene sequence is patented, the holder of the patent can stop research by anyone else.   If a researcher wanted to study asthma, he or she would have to get permission from the holders of the patents on nine genes related to asthma.  If even one of them decided to exert exclusive control of the gene, research on cures and treatments would be stymied.  When a non-profit foundation and the American Neurological Association wanted to finance research to find a cure for a particular genetic disease, researchers were unwilling to undertake the work because of the potential for legal action against them by the holder of the patent.

Many scientists in the US ignore gene patents and do research anyway.  But they are in for a rude awakening.  Unlike in most European countries and Japan, there is no general research exception in the U.S.  So they can later be sued by the patent holder for past royalties in their use of the gene in research.  Or, more importantly, the patent holder can wait until the subsequent researcher discovers something useful, such as a gene therapy using the gene and then assert ownership over it.  Researchers who are aware of the scope of gene patents thus have no incentive to develop a true invention, such as a therapy which makes use of the gene.

The barriers to research caused by patents are even greater in genetics than in other areas of science.  In a study by the American Association for the Advancement of Science, 35% of scientific researchers had difficulty related to being allowed to use a patented invention.  The number was even higher – 76% – for bioscience researchers.  As a result, 58% of scientific researchers responded that they delayed their research, 50% responded that they changed their research, and 28% reported abandoning their research.

One study found that 53% of genetics labs have stopped doing research due to concerns about gene patents.  Another found that 49% of American Society of Human Genetics members have had to limit their research due to gene patents.  Moreover, once a patent is granted in the area of biotechnology, there is a chill on future research using the patented information, including a statistically significant decline in scientific publications using the patented information.

The invalidation of gene patents will be an overall boon to the biotech industry.  While it might threaten companies whose sole asset is an improperly-granted patent on a gene, the liberation of genes will help biotech companies who provide chip technology to test multiple genes at the same time.  The widespread availability of gene sequence information will also reward biotech companies who use that information to create better diagnostic technologies and treatments.

Justice Breyer of the U.S. Supreme Court discussed the reason why it is important not to have patents on products of nature or laws of nature.  He said:

The justification for the principle does not lie in any claim that “laws of nature” are obvious, or that their discovery is easy, or that they are not useful. To the contrary, research into such matters may be costly and time-consuming; monetary incentives may matter; and the fruits of those incentives and that research may prove of great benefit to the human race. Rather, the reason for the exclusion is that sometimes too much patent protection can impede rather than “promote the Progress of Science and useful Arts,” the constitutional objective of patent and copyright protection.

Gene patents are dead.  May they rest in peace.

When DNA Takes Center Stage

Lori Andrews by Lori Andrews

In the wake of the September 11 attacks, Chicagoans Jamil Khoury and Malik Gillani took a unique approach to counter anti-Arab and anti-Muslim sentiment. They formed the Silk Road Theater Company, offering plays which show the complex, multifaceted experiences of people of Asian, Middle Eastern, and Mediterranean descent.  Their productions fight stereotypes with nuanced stories of human similarity and differences.

Now, eight years and multiple awards later, Khoury and Gillani have tackled another complicated and misunderstood phenomenon–genetic testing.  For their latest production, seven playwrights of Silk Road ancestry took genealogical DNA tests and wrote short plays, which are joined together in The DNA Trail.  Performances continue until April 4 at the Silk Road Theater Project, 77 W. Washington, Chicago.

Lori DNA TrailAs the former chair of a federal advisory commission to the Human Genome Project, I was prepared to cringe at any genetic determinism in the plays. I’d been in countless meetings with scientists who tried to reduce complex people to genetic explanations.  One researcher made the controversial claim that, because Maoris were once warriors, he’d searched for and discovered a “warrior” gene in the Maori of New Zealand which makes them more aggressive and violent.  Tariana Turia, a co-leader of the Maori party, questioned why researchers were even looking for the warrior gene in their blood. “Once were warriors?” Turia said to the Daily Telegraph.  “Once were gardeners, once were astronomers, once were philosophers, once were lovers.”

Before the play began, I opened my printed program, which featured bios of the seven playwrights and a brief description of each play.  The first playwright, Elizabeth Wong, started her bio by saying, “I’m in the N9a haplogroup.”  She then went on to say that she thought she was pureblood Chinese, but that the test showed she was linked to a woman out of Africa.

Oh, oh, I thought.  I’d seen data showing that the genealogical tests are not very accurate.  When a journalist sent her DNA to two different companies, she got conflicting results and news that conflicted with her families’ oral history about her ancestry.  The snafu is that 99 percent of our DNA is like anyone else’s, including the people who lived thousands of years ago.  Depending what stretch of the three billion genetic bases the test scrutinizes, I could receive a test result that declares me related to anyone who currently lives or who ever lived.

When the performances began, though, my concerns about determinism vanished.  The playwrights had caught the nuances, complexities, heart-wrenching conflicts, and occasional zaniness of DNA testing.  Wong’s own play, “Finding Your Inner Zulu,” took two sisters on a journey through their DNA that showed how all of us have genetic strengths and weaknesses.  The plays added new twists to questions of identity (Jamil Khoury’s “WASP: White Arab Slovak Pole”) and family (Velina Hasu Houston’s “Mother Road”).  David Henry Hwang’s contribution, “A Very DNA Reunion,” is roaringly funny.  After a son who lives with his parents upsets them by charging a DNA test on their credit card, his purported ancestors–Ghengis Khan, a Ninja, and Cleopatra–show up in his bedroom to help him deal with his folks.  On the other end of the emotional continuum, Shishir Kurup’s captivating and well-acted “Bolt from the Blue” provides a gripping portrait of a family separated by distance dealing with suicide and the propensity to mental illness.

DNA Reunion

Featuring, left to right: Anthony Peeples, Fawzia Mirza, Clayton Stamper, and Khurram Mozaffar.
Photo by Michael Brosilow.

The complexities and significance of genetic testing are laid out in videos on the theater’s website and in essays that cover eight pages in the program.  With the same patience that the Silk Road Theater Project has sought to explain the dreams and goals of discriminated-against people, the Project gives audience members the tools to understand genetic testing.

The extraordinary Nancy Wexler, whose research was responsible for the discovery of the Huntington gene, once said that DNA tests are like card games.  It doesn’t matter what hand you are dealt, it is how you play it.  Once again, the Silk Road Theater Project has played its hand flawlessly.

Should We Clone Neanderthals?

Lori Andrews by Lori Andrews

In 1856, workers in a limestone mine in the Neander Valley in Germany made a startling discovery.  They came across an assortment of bones — a skull cap, a rib cage and certain leg and arm bones — that they initially believed came from a bear.  But when the bones were examined by anatomist Hermann Schaaffhauesen, the field of paleoanthropology was born.  The bones belonged to a distant relative of humans — a Neanderthal.

Now, a century and a half later, the Neanderthals are again in the news.  A group of scientists have completed the rough draft of the genetic sequence of the Neanderthal and compared it to the genetic sequence of modern humans.  The scientists are asking now asking the question:  What legal and ethical issues would be raised by cloning a Neanderthal?

Neanderthals are the closest relatives of humans and lived from at least 350,000 years ago until about 30,000 years ago.   They survived for about 15,000 years after modern humans appeared.  They lived in Europe, where fossils have been discovered from Spain to Southern Siberia.

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DIY Genetics-Biotechnology by Parents, Artists, and…Potential Terrorists

Lori Andrews by Lori Andrews

When geneticist Hugh Rienhoff's daughter Beatrice was born six years ago, he noticed a few traits that differed from his other children.  She seemed a little floppy, her feet were slightly bigger than usual, and her fingers didn't seem to stretch completely open.  In the months to come, she ate well, but didn't gain a commensurate amount of weight.  Although Rienhoff had left clinical genetics to join the venture capital and commercial biotech worlds, concern about his daughter pulled him back in.  After consultations with experts didn't bring a satisfactory answer about the cause of her disease, he took matters in his own hands.  He built a lab in his attic and started sequencing her DNA. 

Although his work hasn't yet established a definitive diagnosis or cure, his increased understanding of his daughter's biological pathways did lead her doctor to put her on a drug which strengthened her skeletal muscles.  He's also created a digital community at where other parents of children with unusual syndromes can share information.   According to an article in Wired, when a Bulgarian man posted information about his 12-year-old daughter's symptoms–inability to shed tears, speech problems, and weak limbs–a geneticist responded by correctly suggesting that the girl should be tested for Triple A syndrome.

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Sorry Darwin, It’s Not All In the Genes.

Lori Andrews by Lori Andrews
time magazine cover - dna not destinyThis week’s Time features a cover story, “Why Your DNA Isn’t Your Destiny.”  This is a far cry from the sentiment twenty years ago at the start of the Human Genome Project.  At that time, a prominent psychiatrist announced, “The war is over in the nature/nuture debate” — implying that everything was due to genes (nature).  Or when, during the Monica Lewinsky scandal, Time itself ran a cover story proclaiming “Infidelity–It May Be In Our Genes.”

In the intervening two decades, scientists have learned that human traits and behaviors are caused by a complex array of factors.  When researchers begin searching for a gene related to height, they found variations at 20 different points in the genome that were related to a person’s stature.  And even if all 20 were analyzed, that only accounted for 3% of the variation between people in height.

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FDR’s Cancer and Abe Lincoln’s DNA: What Rules Should Govern “Biohistory?”

Lori Andrews by Lori Andrews

Historians traditionally probed the lives of past presidents by analyzing their speeches, reading their diaries, and tracing the trajectories of their lives.  But now medical and genetic tools have been added to the arsenal of historic inquiry.  And questions have arisen about the ethical and legal ramifications of the emerging field, “biohistory.”

A new book, FDR’s Deadly Secret by neurologist Steven Lomazow and The New York Post reporter Eric Fettmann, hypothesizes that Franklin Delano Roosevelt had cancer.  The authors and came to that conclusion by analyzing photos of small lesion above his eye, thought to be a melanoma.

The assertion is nothing new. For at least half a century, physicians and journalists, including a 1979 Time magazine article, reported on just such a speculation.  But newspaper and blog responses in the past few days are filled with anger about how FDR could have kept this from the public.  There’s even a sense of outrage that his decision-making during World War II might have been impaired due to the spread of the cancer to his brain.  In yesterday’s PostFettman accused FDR of endangering the nation by running for president with this supposed malady.

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Irish Supreme Court Says Sperm Donor is Legal Dad: Will the U.S. Follow Suit?

Lori Andrews by Lori Andrews

Last week, the Supreme Court of Ireland stunned the reproductive technology community by holding that a sperm donor had legal rights as a father.  Four of the five justices wrote separate opinions as to why an agreement in advance not to be a donor did not prevent the sperm donor from asserting parental rights.

The case, J. McD v. PL and BM, involved a Lesbian couple who chose a friend as a sperm donor.  He signed an agreement stating that the female couple were the parents and he would have a role akin to that of a "favourite uncle."  When he sought a greater relationship, a lower court ruled against him.  But the Supreme Court of Ireland held that he could assert his legal rights. 

The reasoning used by the various justices was sweeping and could be applied to any situation of donor insemination, not just those involving nontraditional family structures.  Chief Justice Murray, for example, seemed to compare the sperm donor, McD., to a biological mother who gives her child up for adoption. Murray indicated that the sperm donor’s consent to relinquish parental rights before the child is born is suspect. Murray said that a sperm donor, "when faced after birth with the reality of a child… may, quite forseeably, experience strong natural feelings of parental empathy and identity which may overcome previous perceptions…arrived at in the more abstract situation before the child was even conceived….  [A] change of heart may be, as it was in this case, an event which raises issues as to whether in the interests of the child access or guardianship ought to be granted to the father."

In the United States, as in Ireland, the biological parents of a child cannot create a private contract which denies either parent's rights or responsibilities.  To get around the legal precedent that private agreements are non-binding, most American states have adopted sperm donor statutes, generally addressed to married couples, which hold that the consenting husband of the woman who is inseminated is the legal father.  There are several loopholes in the American jurisprudence, however.  A handful of states do not have statutes at all.  Some of the statutes only say the husband is the father and the donor is not, but others just say that the husband is the father without specifically cutting off the donor's parental rights.  Some terminate the donor’s parental rights only when a married woman is inseminated, not a single woman.  So, litigation in which a sperm donor asserts his rights is still a possibility in some states.  In the absence of specific statutory guidance that is directly on point, an American court, like the Irish one, would probably turn to the "best interest of the child" standard. 

And changing cultural norms might convince an American court that children have a right to learn the identity of their biological fathers, the sperm donors.  In the Irish decision, Justice Fennelly pointed out, "Scientific advances have made us aware that our unique genetic make-up derives from two independent but equally unique sources of genetic material. That is the aspect of the welfare of the child which arises."

So, ironically, even at the same time that reproductive technology is making it unnecessary for parents to have a biological connection to their child, genetic technology is telling children that biology matters.  And courts may be willing to grant a sperm donor rights, not just for the benefit of the donor, but for the benefit of the child. 

CSI Meets PhD: Should Universities Require DNA Testing of Job Applicants?

Lori Andrews by Lori Andrews

If you're applying for a job at the University of Akron, you may have more to worry about than the old adage of publish or perish.  Whether you want to work as a secretary or a tenured professor, a new university policy empowers the college to require job applicants to submit DNA.  Laurie Massie, a spokesperson for the University of Akron, told CBS News that the board decided to include DNA testing in the policy because "there have been national discussions that indicate that in the future, reliance on fingerprinting will diminish and DNA for criminal identification will be the more prominent technology." 

But Massie’s statement obscures the difference between a DNA sample and a fingerprint.  Taking DNA is more intrusive, even if it is just done through a cheek swab.  A recent criminal case, Friedman v. Boucher, 580 F.3d 847 (9th Cir. 2009), found that police exceeded their authority when they subjected an unwilling suspect to a cheek swab.  Plus, DNA contains far more information than does the fingerprint.  Testing an applicant’s DNA could provide information about whether the applicant, while healthy now, was likely to develop a costly-to-treat genetic disease.  Even if the DNA was only used to see if an applicant’s DNA was in the federal DNA databank because he or she had committed a crime, adding employment searches to the investigative searches of the databank would result in even greater backlogs than currently exist.

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Motherhood Divided: What Should Happen When a Clinic Gives a Woman the Wrong Embryo?

Lori Andrews by Lori Andrews

When Carolyn Savage learned she was pregnant through in vitro fertilization, she and her husband Sean rejoiced.  A few weeks later, though, they received devastating news.  The clinic had implanted the wrong embryo in her.  Rather than carrying their own genetic child, Carolyn was carrying the embryo of another couple.

While some women might have chosen to terminate a pregnancy, the Savages’ own moral beliefs precluded that option.  So instead, they selflessly went forward with the pregnancy, agreeing to turn the baby over after birth to the child’s genetic parents.  The one thing Carolyn Savage requested was a moment for her and Sean to be alone with the baby.  She said, “We want a moment to say hello and goodbye.”

In an interview on the Today Show, Carolyn’s absolute emotional pain comes through.  Whatever abstract legal ideas currently exist about the weight given to genetic bonds over gestational bonds, Carolyn had already begun a nine-month relationship with this child.  And, to make matters worse, she will not be able to carry another child.  If she and her husband want to procreate further, they will have to hire a surrogate mother to carry their remaining embryos.

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