henrietta lacks

Hi, one baby please. We’d like a boy who will grow up to be 6’2″, play the piano, graduate from Harvard Law School, and dance a mean Polka. Actually, make it two, we might want to enroll them in tennis camp together.

The designer baby patent, as it is now known in the media, was recently granted to a company called 23andMe, which has made several splashes in the past few years as they released in-home genetic testing kits and other products. This has caused a lot of consternation among the public as well as the scientific community. I spend a lot of words in these posts declaring my lack of expertise on things, so let me carry on the tradition: I am not a geneticist, an expert in in-vitro fertilization, or a father, any of which might help me to help you understand this issue better, but I will carry on regardless.

One of the primary concerns for technology of this type is, of course, the potential for abusive use of screening technology. At one end of the spectrum are some generally acceptable uses of this kind of thing — screenings for congenital disease that would lead to an early death amid suffering, for instance. At the other end, I think we can agree, are the designer children I described in my intro. Press one if you would like a baseball team full of babies with extreme athletic ability, press six for the next Mozart.

This weekend was also the third annual Henrietta Lacks Memorial Lecture, hosted by the Johns Hopkins Institute for Clinical and Translational Research. For those of you who have not read Rebecca Skloot’s blockbuster non-fiction book about Henrietta, The Immortal Life of Henrietta Lacks, heard her interviews on NPR, or seen her on the Colbert Report AND live in Baltimore, please try to find one of those things right now and come back. The short version, however: Henrietta was born in Virginia, married, and eventually moved to Baltimore in order for her husband to work in the steel industry. In 1951 she was diagnosed with cervical cancer, a condition that led quickly to her death. During her treatment, a sample of her tumor was collected without her knowledge or consent, cultured, and propagated successfully — the first time human cells were successfully cultured. Since then, more than 60,000 scientific articles have been published on research involving HeLa cells; they were used to make the Polio vaccine, and they have traveled into space, among thousands of other applications.

The lecture was largely intended to memorialize Mrs. Lacks and acknowledge her contribution to science and humanity, through the distribution of scholarships for a high school student in the sciences and technology as well as for community college students. In addition, a long hoped for plaque was put up at the end of the day on the former home of Mrs. Lacks, commemorating the site.

The last hundred years have seen a remarkable span of growth in our awareness of bio-ethical issues, which has included the Nuremberg trials, the Tuskegee experiments, the Belmont Report, the Health Insurance Portability and Accountability Act, and others. The rate of informed legislation and rulings on bio-ethical issues is surpassed by the rate of innovation, as with all types of technological advancement, and so a greater burden must fall to us as citizens to act as monitors. There are promising strategies that emerge regularly, but these should not sacrifice the patients involved.

As I say, the past century has seen a dramatic and sometimes shocking number of ethical lapses in the medical and scientific community, particulary pertaining to the use of human subjects. This is one reason that stories like the recent patent granted to 23andMe give us cause for concern. We worry that we (or our brothers and sisters in the human race) will be treated poorly, abused, or taken advantage of.

In fact, this is the position that the Lacks family has been struggling with for over 50 years. At some points they have tried litigation to gain control over the use of the HeLa cell line, or at least share in the massive money-tree that their matriarch begat, or sue Johns Hopkins for their unethical (although at the time, legal) behavior. It is interesting how time and circumstance can change paradigms. The descendants of Mrs. Lacks are not so different from the majority of Baltimore residents. Like their mother/grandmother/great grandmother, many of them are still poor, still in a struggling neighborhood, still in the black majority that is treated like a minority. A process that began 20 years after Henrietta’s death — as researchers began trying to learn more about the cell line — has finally yielded results. David, Henrietta’s grandson, sits on a committee that helps to determine how the full genome of Henrietta Lacks will be used in research around the world. Rebecca Skloot’s book provided insight into the wishes of Henrietta’s daughter, Deborah. And Henrietta herself is remembered as a giving, charitable, loving person who shared and gave freely for the benefit of her community.

How can Henrietta help us to understand? A Baltimorean lady unknowingly at the forefront of a scientific revolution, she could not have guessed at what might come next.

The patent for testing for specific traits is only the beginning of a process that is almost certain to continue. Increased consumer access to previously Ivory-Tower-style scientific advancement is nothing new; in fact, it is something old. It is exactly how diffusion of innovative technologies always works, for better or worse [author’s note: except in the health care system, which is a discussion for a different day]. We are still struggling to determine how best to regulate the cell phone, which just had it’s 40th birthday, so even if we are concerned that drive-thru babies are about to ruin our world, something like that idea is eventually coming, in one form or another, and a better strategy than stopping it would be to make sure it happens with ethical oversight, by entities who have committed themselves to the public good. We shall see if 23andMe lives up to that challenge.