Fighting over Tissues

“What?! What you mean you got her cells in your lab?” Bobbette Lacks yelled across the dining room table. Bobbette had just discovered that her mother-in-law's cells were being used in research labs across the world, despite the knowledge or permission of any of the Lacks family members, even Henrietta.

The treatment of biological materials in science has vastly changed since 1951, the year Henrietta’s cells were taken and immortalized in culture. While sixty years ago it was common practice for doctors to collect tissue samples without the knowledge of the patient, doctors must now obtain the consent of patients before removing any tissue. Depending on the nature of the informed consent agreement, patients may exercise the right to direct the destruction of their donated tissue after donation. Although a precise definition of tissue ownership has not yet been specified for every possible scenario, the definition has been narrowed as more cases have presented themselves in court.

The 1990 case of Moore v. Regents University of California, established a patient's right to awareness of the intended use of the tissues they have willingly donated. In Greenberg et al. v. Miami Children's Hospital Research Institute, Inc., et al. (2003), the court clarified that tissue ownership is transferred to the recipient upon donation, granted informed consent was obtained for the tissue sample(s).

The advent of DNA sequencing technologies has further blurred the line regarding ownership of genetic material. Since the first human gene was patented in 1980, somewhere between 3,000 and 5,000 genes have been patented in the U.S. alone. The process of gene patenting has since changed, however. In the 2013 Association for Molecular Pathology (AMP) v. Myriad case, the court clarified that the patenting process applies only to inventions, not discoveries. In other words, a gene sequence found to exist within an organism is not considered patentable, whereas a DNA sequence synthesize in a lab could be patented. Overall, the court’s ruling reduced the types of genetic materials whose applications could be restricted on the basis of intellectual property. Given the growing collection of sequencing data, it is critical that we ensure the simultaneous protection of patients and scientists.

Man's Best Friend

Ever wondered why humans share such a tight bond with their pet dogs? Some dog owners treat their furry friends as if they were children-- and science has a reason for this.

It turns out, dogs have inserted themselves into the hormonal loop that is responsible for scientifically solidifying the connection between a mother and its newborn child. When a mother is breastfeeding her child, her levels of oxytocin rise, causing her to feel a tighter bond to her child. Dogs are capable of triggering this same oxytocin release in their owner by a look in their eyes. And humans return the glance, inducing heightened oxytocin levels in their dog. Science writer Ed Yong aptly describes this phenomenon as a "chemical loop that unites the brains of two different species."

To test this oxytocin link between the species, scientist Miho Nagasawa allowed 30 dogs to interact with their owners. He collected urine samples from both species before and after interaction, and assessed each sample for a change in the level of oxytocin. Not only did Nagasawa find that an owner's gaze raised the dog's oxytocin levels, but he also found that the longer the owner stared at its dog, the more the dog's oxytocin levels rose. The same could be said for humans: the longer the dog stared at them, the more their oxytocin levels increased.

While humans and dogs engage in interspecies hormonal bonding, the same can't be said for wolves. Wolves maintain less eye contact with humans and the glances they do exchange do not elevate oxytocin levels. This distinction between dogs and wolves may mark the evolutionary event that caused humans to select for dog precursors in the domestication process.

More to Life Than Cells

As Henrietta Lacks stepped out of her Buick and into Johns Hopkins Hospital, she knew what she was getting herself into. Or so she thought. The year was 1951, and Lacks had just discovered a “knot on [her] womb,” what the doctors at Hopkins later described as cervical cancer. Though her scientific knowledge was limited—she had dropped out of school in sixth grade and spent the majority of her life as a tobacco farmer in Clover, Virginia—Lacks knew she wanted these cancer cells removed and killed. What she didn’t know was that while she spent days in the hospital, lying with a tube of radium sewed to her cervix to kill these cancerous cells, some of them were untouched by the treatment. In fact, they were carefully being kept alive in a tissue culture lab at Hopkins.

Whether or not Henrietta would have been comfortable with this concept no one knows; no one thought to ask. She spent the remaining years of her life unaware that some of her cells—referred to as “HeLa” cells by scientists—were living a separate life outside her body. And that life was one of fame: by the time her family found out, HeLa cells had already been named the first immortal cell line, they had already been used to develop a vaccine for polio, they had already become the first human cells to be cloned, and they had already become the first successful animal-human hybrid cells when they were fused with mouse cells. As HeLa cells were being passed from lab to lab like currency, Henrietta’s children struggled to afford health insurance. When HeLa cells were found to have travelled to Russia and contaminated other cell lines, some of the Lacks family was still living near “Lacks Town,” the road along which the family had grown up.

In “The Immortal Life of Henrietta Lacks,” Rebecca Skloot captures these two separate worlds, pulsing back and forth between them with each new chapter, weaving them closer together until they eventually collide. Although the book was published in 2010, Skloot conceived the idea when she was only sixteen years old. Her biology teacher had just taught the class the basics of cell division, and how it only takes one slight change in a protein to set the whole cycle off-balance, ultimately causing cancer. Almost as an afterthought, her instructor explained that these discoveries were made possible by studying a particular line of cancer cells: HeLa cells. Her instructor explained that although HeLa cells were the source of a wealth of medical knowledge, not much was known about their source. And just like that, Skloot’s curiosity was born. “Where was [Henrietta Lacks] from?” Skloot asked herself, as well as “Did she know how important her cells were [and] did she have any children?”

Lacks Privacy

Imagine that you woke up one day to find that all your most private information—social security number, bank account details, and credit card numbers—had been published online. Now imagine that instead of numbers, your name was attached to a string of the letters. Not just any letters, but arguably the most personal set of letters—A, T, G, and C—the ingredients of your DNA. This is exactly what happened to Henrietta Lacks. In March 2013, sixty-two years after Lacks’ death, a group of scientists published the complete sequence of her genome, leaving her descendents and the public to decide how to handle the story of Lacks’ past, as well as the future of genetic information across the globe.

The sequence was published in order to allow researchers around the world to be able to independently verify the identity of the cells with which they were working, since contamination from other cell lines is a common problem associated with cell culture. However, its publication simultaneously exposed private information regarding the Lacks family: the DNA is full of hundreds of thousands of sites where mutations can occur, and those mutations could reveal an individual’s predisposition to certain diseases. If this information were to get into the wrong hands, patients (and their relatives) could be denied health insurance on the basis of a high-risk profile. Some argued against this potential danger, claiming that modern science was not sophisticated enough to allow for interpretations regarding the health of the Lackses based on the raw HeLa genomic sequence. Several scientists disproved this suggestion using a simple, freely available web tool; however, their findings were kept private. Others in favor of the public availability of the genomic sequence argued that HeLa cells had acquired so many changes in their DNA since 1951 that their genome no longer revealed any information about the Lacks family past or future. This suggestion, however, was similarly shot down by genetic analysis. Since the Internet has the advantage and disadvantage of allowing information to be shared rapidly, the NIH knew it had to act quickly, or not act at all.

Although the NIH swiftly restricted access to the HeLa sequence, the sequence was posted long enough that 15 people to downloaded it, and many others considered the implications. Now, to gain private access to the genome, researchers must apply to a committee, which is comprised of researchers, as well as members of the Lacks family. Although this decision answered the ethical question of privacy, it raised a new one regarding open sharing of knowledge. The restricted access to the HeLa genome sequence was anticipated to slow progress the field of biomedical research. On a more general level, though, restricting access to human genomes might prevent the generation of personalized medicines—therapies catered to an individual’s genetic makeup. The publication of the sequenced HeLa genome may have exposed the genetic history of a family, but the public response has foreshadowed the future era of genetic privacy.