The quest for the perfect baby?

What are we giving our children?
As we advance in genetic science, the "designer baby" gets closer to becoming a reality. Thinking less and less about the consequences, we give our largely healthy children increasing amounts of prescription drugs - when we should have learned from the mistakes of the growth industry. Authors Susan Cohen and Chris Cosgrove can give concrete examples of how this parental urge to perfect has caused more harm than good.

How safe are the drugs that we take - and give our children?
Earlier this month, Eli Lilly (one of the major manufacturers of hGH) agreed to pay more than a billion dollars in settlement over illegal marketing of their antipsychotic drug Zyprexa. For years, Lilly has been downplaying the adverse side effects of the drug and encouraging off-label prescription to children and the elderly - two groups most susceptible to its side effects. Lilly and Genentech, another hGH manufacturer, used nearly identical tactics with human growth hormone, the effects of which are still felt by thousands today. How can parents tell what is safe? Cohen and Cosgrove can detail what really goes on in one of these trials and how drug companies get away with skewing the facts for so long.

Who controls what's "normal"?
To justify prescribing unapproved medications to generally healthy kids, many drug companies lean on studies pointing to "psychosocial" effects of living outside the height norm. However, when looked at individually, these studies prove little if anything about height's affects on happiness and success. Drug companies and doctors twist these social norms to form a basis for medicating. Taking apart these studies and what they really say about height norms, Cohen and Cosgrove can discuss why medicating children does nothing to alleviate social pressures.

Why are Europe's medical records so much more advanced than ours?
Compared to many other Western and Asian countries, our infrastructure hasn't advanced alongside our technology - and this is no truer anywhere than our healthcare. In this information age, when it feels like everything is available on the internet, it seems medieval that Americans would be unable to access their own medical history. Making children's medical records available to them and their future doctors is just one benefit of Obama's stimulus plan- he proposes to spend $20 billion to computerize all national medical records in 5 years. Cohen and Cosgrove can address exactly what could - and still can - have been prevented with a better medical infrastructure.

Do drug companies bribe doctors?
Luckily for pharmaceutical companies, doctors often prescribe medications off-label - for serendipitous side effects, or uses not yet approved by the FDA. As they did in the growth industry, drug companies still highly encourage this behavior - sometimes leading to catastrophe. Drug marketing changes the way doctors draw the line between what is normal and what is a disorder, and there are far more incentives to encourage treatment than to study a drug's long term effects. This topic has gotten recent attention by Reuters: here and here. Citing the long history of improper marketing in the growth industry, Cohen and Cosgrove can discuss how this still goes on today in your own doctor's office - often without you even knowing it.

Tips

  1. Do take children to the doctor regularly, even after infancy, because poor growth may be an indication of a variety of conditions, including poor nutrition. However, the vast majority of short kids are healthy.

  2. If a doctor says your child is below normal, ask what the doctor means by "normal." Unhealthy? At risk for disease? Or at the high or low end of the statistical curve in the U.S.?

  3. If your child is unhappy and that's the reason you're considering treatment, ask if there are alternative therapies available to you, including the possibility of psychological counseling to help your child cope or to help you as a family decide whether or not to proceed with years of expensive shots.

  4. Ask if there is something you can read about the proposed treatment, something that has not been influenced by a pharmaceutical company. It's very difficult to find information that hasn't been swayed by marketing departments, but in this case parents are lucky. Besides our book, there is an excellent guide for parents of short kids called "The Short Child: A Parents' Guide to the Causes, Consequences, and Treatment of Growth Problems," written by two pediatric endocrinologists with no drug company ties.

  5. Don't expect your doctors to play God, and if they do, call them on it.

  6. Probably the single scene in Normal at Any Cost that I would most highly recommend to parents is that describing the FDA hearing on approving growth hormone for short healthy kids. As medical consumers, we have an inflated sense of what the FDA means when it says a drug is safe and effective. Drugs that are safe and effective in the short-term and in a small population, sometimes run into trouble in the long-term and when used much more widely.

  7. It's difficult being a parent, and one of the hardest tasks of parenting is the balance between helping your child to be the best he or she can be, and helping your child accept themselves for who they are.
About the book and authors:
Susan Cohen and Christine Cosgrove are the authors of "NORMAL AT ANY COST: Tall Girls, Short Boys, and the Medical Industry's Quest to Manipulate Height." It's the first book to put all the data from the growth industry's development in one place. On sale March 19, it is a thorough and cinematic medical memoir, invaluable for parents considering any kind of medical manipulation of their children

Susan Cohen is a freelance writer in Berkeley, California. She's been a reporter for the San Jose Mercury News, a contributing writer to the Washington Post Magazine, and a full-time faculty member of the University of California Graduate School of Journalism. Among her many journalism honors, she's won the Science in Society Award from the National Association of Science Writers and a John S. Knight Fellowship at Stanford University. Also an award-winning poet, she has two grown children and lives with her husband, Robert R. Youngs, an earthquake engineer.

Christine Cosgrove is a medical writer who has contributed numerous stories to WebMD, ReutersHealth, and a variety of other newspapers and magazines. She has worked as a reporter and editor for more than 25 years, beginning with United Press International in New York City, and later as a senior editor at Parenting magazine. She has a grown daughter and lives with her husband in Berkeley, where she also writes and edits for the University of California. As a tall teenager she was treated with DES (diethylstilbestrol) in an effort to stunt her growth

A disturbing announcement went out a couple of weeks ago: Dr. Jeffrey Steinberg, part of the team behind the "test-tube baby" and head of the Fertility Institute in California and New York, has claimed that the world's first "designer" baby will be born next year. The technology the institute is selling to would-be parents will allow them to increase odds of desired hair color, eye color, gender and more.

An expensive and controversial endeavor, the extent to which parents will go to "perfect" their children is nothing new. Since the mid-twentieth century, children have undergone treatments and taken drugs with unknown side effects to manipulate their height. From synthetic estrogens given to tall girls, to human growth hormone given to small boys, children have been on the receiving end of Big Pharma's push to manipulate height and make money off parents' fear of "abnormal" children.

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