04 December 2013

Loose Genes


by Robert Lopresti

This is not going to be as cohesive as (I hope) most of my pieces here are, because I have three vaguely related things I want to talk about.  And they have only a slight connection to crime or mystery.  The fact that I'm fighting a cold doesn't help.

So if you prefer to skip this and go check your email you won't hurt my feelings. If you're still with me, here goes.

A relative recently told us she had her genome tested and invited us to do the same.  This feat, which would have been the wildest science fiction a few decades ago, now costs about a hundred bucks and takes a couple of weeks.  You spit in a test tube, and wait to get an email.  Not exactly Doctor Who, is it?

And the results, I have to say, are pretty cool.  My background, as far as I know, is one-half Italian, three-eighth English, and one-eighth Irish.  The computers spotted 10% Italian, 3% British/Irish, 2% French/German, and the rest is mostly vaguely European.  There is a tantalizing 0.2% Sub-Saharan African, which I assume comes from my Italian ancestors.  (To paraphrase Pete Seeger, where do you think those Roman emperors got their curly hair?)  Oh, and I am 2.8% Neanderthal.

But more interesting, the same service tells you if you have inherited health risks that are greater or lower than average.  And that is why the Food and Drug Administration just sent them an order to cease their business.  Because, says the FDA, they were giving out medical advice, which is illegal.  I look forward to seeing how it turns out in court, but I will say this: I have a higher-than-average level of one chemical and my doctor has been trying for years to figure out why.  The computer gurus (knowing nothing about my medical test results) were able to tell me that that higher level runs in my genome.

If you want to know more about the controversy, read this and this.

Now, on to the second topic.  I am reading a fascinating and infuriating non-fiction book by Rebecca Skloot entitled THE IMMORTAL LIFE OF HENRIETTA LACKS.     Ms.  Lacks suffered from bad luck nine ways from Sunday.  She was an African-American woman born in poverty in the rural south in the early-twentieth century.  (I am not saying it is bad luck to be born African-American.  But there have been better times and places for it.)  She died of cervical cancer in 1951 at age 31.

But before she died scientists took samples of her tumor, possibly with her permission (the phrase "informed consent" hadn't even entered the medical vocabulary by that point).  Scientists had been trying for years to grow cells in test tubes, but the cells always died after a few generations.  Not so the HeLa cells (named for their original source).  They were "immortal," and could be cultured, multiplied, sent through the mail, experimented on, etc.

And so cells that began in this poor, hard-luck woman, were used to develop polio vaccines, were sent into space, and became essential parts of thousands of other studies.  (The name of that genome company I was talking about is 23andme, which refers to the 23 chromosomes in the human genome. Guess whose cells were used in figuring out that number?)  Ms. Lacks' cells were so potent that years later many other colonies of cells that were growing around the world were discovered to be contaminated with HeLa cells - even though none had been used in that laboratory. They could sneak in on a dirty test tube, or a scientist's coat.

The book, which I highly recommend, also discusses the baffled horror of Ms. Lacks' family as they discovered, decades after the fact, what had been done to parts of her body without their knowledge or permission. The conflict between the scientists and the family takes on the inevitability of Greek tragedy: there was simply no common ground for communication.  You find yourself expecting the next unintentional outrage.  When it becomes necessary to explain the concept of "genetic markers" to Ms. Lacks's widower, a man with four years of schooling, of course the scientists had it done over the phone by a researcher with a thick Chinese accent and imperfect English.  How could it have been otherwise?

Reasonable people can disagree about whether persons whose cells are used in research deserve any control or compensation. (There are more than 17,000 patents based on HeLa cells.)  But it boggles the mind that  some scientists in the early fifties thought it acceptable to secretly inject HeLa cells (highly  active cancer cells, remember) into surgery patients just to see what would happen. This went on until some physicians refused to participate, pointing out that eight doctors were hanged at Nuremberg for that sort of research.

And on that cheerful note, let's move on to my third topic.  I just finished reading NECESSARY
LIES, the most recent novel by my sister, Diane Chamberlain.  You can certainly accuse me of nepotism for bringing it up here, but I think you will see the connection.  Diane's excellent book is fiction, of course, but it is firmly rooted in the Eugenics Sterilization Program, under which North Carolina sterilized 7,000 people between 1929 and 1975.  They focused on "mentally defective" epilectics, and people on welfare.  Most states with such programs gave them up after World War II (the shadow of Nuremberg, again), but the Tarheel State actually boosted theirs.

Diane's novel is set in 1960 when a brand-new social worker (after three whole days of training!) is given the job of preparing the sterilization request for a pregnant fifteen-year-old.  The idea is that the girl will wake up after giving birth with an "appendectomy scar" and never be told  she has been sterilized.

The book is not a mystery.  It is not a melodrama either: there are no cackling villains.  Everyone thinks they are doing the right thing (just like the scientists who used the HeLa cells).  And Diane is careful to include one woman who is thrilled to get the operation, since birth control was not easily available.

There are crimes and punishments in the book, but whether the crimes are what gets punished is open to interpretation.

Well, I'm going back to my sickbed.  I hope I gave you a few things to think about, anyway.

10 comments:

Fran Rizer said...

Three interesting segments. Stay in the sick bed for a while and get well!

Janice Law said...

Feel better soon - and good luck to your sister with her book.

Leigh Lundin said...

Rob, I don't know what medicine *hic* you're taking, but you outdid yourself in the article.

I hope you feel better, my friend.

David Edgerley Gates said...

I wonder if you could make the jump to the Tuskegee experiments, where unwitting black guys were intentionally infected with syphilis, to study the long-term effects?

In any event, dose up (no pun intended), pile on the chamomile tea and chicken soup, and get better.

Eve Fisher said...

Rest, get well - and a great article. Informed consent? Surely you jest. Look, even today, you go into a doctor's office, and they ask, "Do you mind if a student comes in to observe?" WHEN THE STUDENT IS ALREADY THERE. Or, "I'm Dr. X's PA, and I'll be taking care of you today, unless you really want to see Dr. X." And just because they've started with what they want to do - have the student there, do not have the doctor there - most people will shrug and say "sure." And that's the relatively harmless stuff...
Good for your sister Diane's book. I need to take a look at it. Now go take some medicine. [Hic]

Elizabeth said...

I used to work in the pathology department of a women's hospital. We were supposed to refer to HeLa cells as "Helen Lane" cells, in an attempt to preserve Henrietta Lacks' privacy.

Look up Mo cells. This was a ripoff of astronomical proportions. The case went all the way to the Supreme Court, but it still didn't help the person whose cells they were.

Diane Chamberlain said...

Loved the article, Rob, and appreciate the mention of Necessary Lies. There is another similar event related to lack of informed consent in US history (which I just so happened to have written about in Breaking the Silence. . . ) and that is the CIA mind control experiments performed on unwitting psychiatric patients in the 50s. The congressional hearing into those experiments eventually led to the concept of "informed consent".
Hope you feel better soon! I just gave in and visited my doc and am now well drugged. xoxo

Anonymous said...

What's really nasty about the whole HeLa cell line is that they ruined a tremendous amount of research. The way it was discovered they had contaminated all these different cultures is that one too many studies came up with the same, identical results for experimental procedures that were supposedly done on DIFFERENT cell lines. So somebody thought to test and see if they were really different -- since clearly there was a problem. (There ought to be variation in results if there is variation in materials.) And bam! Cell line after cell line turned out to be identical -- all clones of that one original line. This was why all the results were in such strong agreement. It wasn't that the treatment was so powerful, but that all the treatment experiments were being carred out on ONE cell line rather than a bunch of different ones. It wiped out years of research results and hundreds of millions of dollars spent on that research in a matter of months. They were all worthless. So it was a huge big deal in ways that are still having an impact on medical research. A lot of it is back to square one after it had looked like progress was being made. (I am an ex-biology professor.)

Robert Lopresti said...

David, you asked if we can make the jump to the Tuskegee syphilis study. The first production line of HeLa cells was at the Tuskegee Institute. African-American scientists and technicians were producing those cells at the same time that that obscene syphilis study was going on. So you don't have to jump, just stroll across the campus.

Liz, the book also talks about the Mo cells and other examples of people attempting, sometimes successfully, to make money off what their bodies produced. What I recall most was various hospitals, companies and scientists arguing that this couldn't be allowed because battles patients battling over the rights would slow down medical research. As they were making this argument they themselves were battling each other for the same money. But God forbid the patients get into the game...

Dixon Hill said...

Rob: Would that all my "not ... as cohesive" writing examples could merge so effectively into a single chord!

I found your article fascinating, and the comments -- particularly those by the ex-biology prof -- surprising and troubling. Thanks for such great reading.

--Dixon