The Forever Fix: Gene Therapy and the Boy Who Saved It (324.0KB)
flyer / handout
June 22, 2011
I discovered a treasure at a thrift store. For 89 cents, I bought “The People’s Common Sense Medical Adviser in Plain English or Medicine Simplified,” by Dr. R. V. Pierce, head of The Invalids’ Hotel and Surgical Institute in Buffalo, New York, circa 1909. In these days of WebMD and direct-to-consumer genetic testing, this peek into medical history is quite an eye opener.
The first part of the 1,000-page tome is eerily similar to the human anatomy and physiology textbooks I co-author. Some things don’t change much. The final section unveils an astonishing natural pharmacopeia, from various barks and roots, to pulverized rabbit testicles to cure older men suffering from erectile dysfunction, or perhaps the newly-named “low T.” In between are sections that are just odd.
Chapters cover hygiene, “mother and babe,” marriage, and my personal favorite, “self abuse.” “Statistics show that insanity is frequently caused by masturbation,” admonishes Dr. P., and it can be deadly. He rails against “criminal abortion,” which is “secretly practiced by women who desire to rid themselves of the evidence of immorality, and by those in wedlock who wish to avoid the care and responsibility of rearing offspring.” And the good doctor has ideas about race that echo back to Darwin. While genetic researchers today marvel at the diverse genomes of the Koisan of Namibia, Dr. P. equates them to baboons.
The Medical Adviser is just as telling for what it omits – cancer, for example – from a time when tuberculosis (“consumption”), smallpox, and various fevers were of far more concern. It teems with terms probably not uttered in decades, and new to me: erysipelas, quinsy, scrofula, and of course spermatorrhea, about which the esteemed author obsesses (more on that soon).
The book is festooned with marvelous illustrations and page after page of testimonials. Sexism is entrenched. While names and photographs accompany the musings of women with “female weakness,” “womb trouble,” and “nervous collapse,” complaints from men with the aforementioned spermatorrhea (“seminal weakness,” aka premature ejaculation, thanks to self abuse) are identified only by case numbers.
I think Dr. P. could have used a female co-author.
June 6, 2011
Early June marks the 30th anniversary of the reporting of the first AIDS cases, but it’s also an older medical anniversary – recognition that the drug diethylstilbestrol (DES) derailed development of the reproductive systems of a huge cohort of fetuses. I was one.
My mom, like millions of others, was handed “a vitamin” while pregnant with me in 1954, which in those days of medical paternalism, she never questioned. And so when I became a teenager, I began to drip, and was hauled off to the gyno. The verdict: Adenosis. The label: DES daughter. It was scary.
As an endocrine disrupter before the term was coined, DES, among other things, played havoc with the boundaries between tissues of the cervix, which prevented glands from vanishing on schedule. With the hormonal onslaught of adolescence, the errant glands went into overdrive. Fortunately, I didn’t have the otherwise rare cancer whose sudden appearance led to identifying the problem, as with AIDS. I also escaped the trademark DES small uterus, and my husband, a DES son, escaped XY-related problems. But my mom did die of breast cancer – another legacy of the “vitamin” thought to protect against pregnancy loss. And so far the DES Follow-up Study on the third generation – my three daughters – has revealed only a slight increase in ovarian cancer risk that is likely a statistical fluke awaiting larger numbers.
Pregnancy paternalism took years to dissipate. In 1981, my ob clearly knew something was amiss, but he said nothing. And so we were shocked at the on-time birth of daughter #1, who weighed less than the scraggliest chicken at the supermarket.
Then in the middle '80s I began providing genetic counseling at CareNet Medical Group in Schenectady, NY, founded by a wonderful ob/gyn, Hong Kyu Cheon, whose mother had been a midwife in Korea. When he retired, he handed the practice over to his daughter and daughter-in-law. Today CareNet is run by women. It's not that an XY ob/gyn can't be competent or caring, but there is something comforting, given what happened to my mother, about a woman-run practice.
And how things have changed! Patients now come into doctors offices already very informed, even naming specific drugs thanks to all the TV ads. My genetic counseling patients come armed with printouts describing their risks and possible tests, and sometimes even direct-to-consumer genetic test results. It is hard to imagine my mother's time, when she was expected to happily take anything the white-coated authority figure handed out.