Tag: genetics

Final Wellcome Book Prize Shortlist Review: The Vaccine Race by Meredith Wadman

I had hoped this would be a comparable read to Rebecca Skloot’s The Immortal Life of Henrietta Lacks and Siddhartha Mukherjee’s The Emperor of All Maladies, which are two of my absolute favorite books and were also among the first to turn me on to medical-themed literature. Instead, I found myself skimming through the book’s dense scientific and historical information: like Mukherjee’s other book, The Gene, which made last year’s Wellcome shortlist, The Vaccine Race is overstuffed with a mixture of the familiar (for me, at least – genetics), the seemingly irrelevant (cell culture techniques and scientific nomenclature), and the truly interesting (questions of medical ethics).

The unlikely protagonist of this story is Leonard Hayflick, a single-minded and resourceful researcher who is still alive in his late eighties and assented to dozens of interviews and many more e-mails as Wadman put this book together. While in high school Hayflick made a chemistry lab in his basement, and in college he built his father a dental lab: that tells you how driven he was. After graduating from the University of Pennsylvania, he worked at the Wistar Institute on its campus. He chiefly investigated whether viruses cause cancer and whether a cell line will be immortal or subject to the normal rules of aging – the Hayflick limit, named after him, is the number of cell divisions possible before a cell line dies out.

Hayflick experimented on his third child’s placenta, but also on aborted fetuses from the university hospital. Replacement fetal cell lines sourced from the Karolinska Institute in Stockholm, Sweden were used to produce the polio, rubella and rabies vaccines. In particular, he relied on the WI-38 line he developed from fetal cells taken from the Swedish “Mrs. X,” who – like Henrietta Lacks’s family – was never compensated; she did not want to be interviewed for or mentioned by name in this book. In the 1970s, with Roe v. Wade in the pipeline, the controversy over using aborted fetal tissue in research heated up*, and Hayflick was somewhat disgraced in the course of a 1976 lawsuit about his right to profit from WI-38.

But that’s not the only dubious ethical situation associated with the development of the twentieth century’s major vaccines: Hayflick’s bosses and associates had also tested early vaccines on intellectually disabled child “volunteers,” while a celebrated cancer researcher had injected cells into dying hospital patients and healthy prisoners in the name of science. Wadman writes, “by the mid-1960s, ordinary people were becoming less willing to give scientists carte blanche to tinker with human beings on a ‘Trust me, I know what’s best for you’ basis.” The question is whether these morally suspect strategies were worth it, given the alternative: rubella in pregnancy causes severe birth defects including blindness, while polio can be crippling and untreated rabies can lead to a slow and painful death.

These ethical questions are certainly worth thinking about, though the abortion history in particular is probably of much more interest to American readers. Here in Europe, abortion is a non-issue, so I don’t expect anyone to get fired up about the history of fetal tissue research. Wadman is certainly a thorough researcher and capable storyteller who doesn’t talk down when explaining science. That said, she might have scaled back on the science a bit to ensure that her work holds broader appeal for lay readers of popular science and medical history.

*More recently, Debi Vinnedge’s Children of God for Life nonprofit has opposed stem cell research despite a Vatican ruling that vaccines developed from fetal tissue are acceptable to use as long as there is no alternative.

My rating:

 

See what the rest of the shadow panel has to say about this book:

Annabel’s blog tour review: “The thrillerish feel to big pharma’s politics, and Hayflick’s continual battles for recognition and against anyone who wanted to take his cells away from him made for fascinating reading and added the much-needed human aspect.”

Clare’s review: “The Vaccine Race is a very dense read and some of the lengthier descriptions of things like the finer points of the biotechnology industry went a bit over my head in places. … However, the ethical debates are fascinating and clearly presented.”

Laura’s review: “Wadman writes clearly and compellingly, and given how much material she’s handling, managing to structure the book sensibly is a feat in itself. But I felt that The Vaccine Race was often not one thing or the other.”

Paul’s review: “It is a very important story that Wadman is telling … especially given that we may well be on the dawn of a new era in medicine with the rise of immunity against antibiotics.”

(Also, be sure to stop by Paul’s site today for an exclusive extract from The Vaccine Race as part of the ongoing blog tour.)

 

My gut feeling: This is the most science-y of the six books on the shortlist. For me that actually works against the broadness and public-facing nature of the prize, as expressed in its brief: “At some point, medicine touches all our lives. Books that find stories in those brushes with medicine are ones that add new meaning to what it means to be human. The subjects these books grapple with might include birth and beginnings, illness and loss, pain, memory, and identity. In keeping with its vision and goals, the Wellcome Book Prize aims to excite public interest and encourage debate around these topics.”

 

Shortlist strategy:

  • Tomorrow I’ll quickly recap my thoughts about the two shortlisted books I read before the shortlist announcement, With the End in Mind and The Butchering Art.
  • On Saturday morning I’ll announce our shadow panel winner. That day Clare and I are attending an event featuring five of the shortlisted authors in conversation at the Wellcome Collection in London. I’ll report back about it on Sunday.
  • Monday is the awards ceremony, which I’ll be attending for the second year in a row. Expect my write-up of the experience on Tuesday. (In between you get a break from Wellcome Prize stuff with Library Checkout plus some recommendations for May!)
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Medical Mysteries: Joselin Linder’s The Family Gene

Yes, another memoir on a medical theme! I really do read a lot of them. My eye was drawn to The Family Gene: A Mission to Turn My Deadly Inheritance into a Hopeful Future by Joselin Linder because of the medical mystery aspect: 14 members of Linder’s Ashkenazi Jewish family are the only known exemplars of their particular genetic disease, so rare it doesn’t have a name or surefire treatment protocol, but now at least has a location on a chromosome.

Linder’s awareness of her family’s peculiar medical problems began when her father, William, himself a doctor near their home in Columbus, Ohio, started having a persistent build-up of lymph (also known as chyle) in his abdomen – usually a sign of heart or liver failure. At one point doctors tapped four liters of the stuff from his lungs. Her father’s illness threw Linder, then a junior in college, for a loop; drugs and music started to replace academics. After he died, aged 49, in September 1996, she became a nomad, moving from Prague to San Francisco to Brooklyn and dabbling in different careers.

Only gradually did they all realize that the same thing had happened to William’s uncle, Nathan, in the 1960s and his grandmother, Mae, before that. While Mae lived to age 54, Nathan died at 34, even after treatment at NIH. Along with the lymphedema, a heart murmur was a common factor. William’s brother, Norman; Linder and her older sister, Hilary; and various cousins of their generation were diagnosed in this way. The author’s own symptoms were initially easily to ignore – swollen ankles and a low platelet count – but escalated in her thirties: a blocked vein in her liver meant she was in danger of bleeding out if she vomited.

It’s rare to be able to trace a genetic disease from its founder through to the present. In Linder’s case, her great-great-grandmother, Ester Bloom, is the first known sufferer. Researchers eventually isolated their family’s gene on the X chromosome, near the location for asthma. This explained why, historically, female family members had a better prognosis than males – they have one normal X chromosome and one diseased one; men only get the defective X chromosome – and why asthma medication helped to an extent.

There are a couple of chapters here on the basics of genetics that felt a little condescending to me; for anyone with a high school or A level biology qualification, the simplistic metaphors explaining the workings of DNA may seem superfluous. I also had trouble relating to Linder’s immediate reaction to her father’s death. Although he’d been severely ill for years by then, her attitude still seems a little heartless. Of the decision to take him off dialysis, she writes, “I was on board. It was time to call it a day.” When the family went around expressing opinions, she said, “I think it’s time, Dad. You’ve been through so much,” to which he replied “F— you”! An ex-boyfriend’s suicide a couple years later affected her much more than her own father’s death. Grief affects people in strange and unpredictable ways, I guess.

What I most appreciated was how the book sensitively reveals the ways a genetic condition complicates life, especially in America: Linder had to do without health insurance for 10 years, having been denied it in Ohio on the grounds of a pre-existing condition. In addition, she and her sister faced a quandary common to those who carry genetic diseases: should they have children? While Hilary underwent pre-implantation genetic diagnosis, a form of IVF, to bear healthy twins, Linder ultimately decided against having children.

I enjoyed the earlier part of this genetic quest narrative a bit more than the later material about Linder’s symptoms. Still, I can recommend this to viewers of House and readers of Susannah Cahalan’s Brain on Fire and the like.


The Family Gene is released by Ecco today. With thanks to Beth Parker and James Faccinto for the electronic review copy via Edelweiss.

My rating: