Exploring the medical- genetic frontier

What if we could change our genetic makeup, such that our brown eyes turned blue?  And if that were so, wouldn’t society be best served by using that transformative power to cure diseases, rather than for cosmetic purposes?

These and other implications of the burgeoning field of genetics are the subject of an upcoming local seminar, which will bring together some of the nation’s leading thinkers in the field. (See below for details)

The seminar has a special emphasis on Jewish genetic diseases and potential treatments because the organizer, Dr. John Lantos, conceived it that way.

Dr. Lantos, who is himself Jewish, holds the John B. Francis Chair in Bioethics at the Kansas City-based Center for Practical Bioethics. He is also a professor of pediatrics and bioethics at the University of Chicago. He has lived in the Kansas City area for the past two years.

In an interview this week in his office at Children’s Mercy Hospital, Dr. Lantos explained why he organized the upcoming conference.

“There have been fascinating developments in genetics, leading to what is called personalized medicine,” Dr. Lantos said. “It’s still mostly a dream, but the idea is that, instead of studying diseases and treatments the way we have since the beginning of time — which is to figure that all people act the same — we can now figure out how people are different and customize treatments for each individual genetic makeup.”

Advances and ethics
And while that sounds promising, if potentially expensive, our increasing knowledge of how genes affect our health could have a downside, too, ethicists and others warn. For example, just think if a potential employer or insurance company could examine your genetic makeup and reject you for a familial tendency toward heart disease or cancer.

Thus, two of the presenters at the seminar are rabbis who will bring Judaic religious and philosophical concepts to bear on these issues. One of them is Rabbi Noam Zohar, who teaches philosophy at Israel’s Bar-Ilan University. He’ll be part of a discussion titled “Personalized Medicine and the cost of health care. Will individualized diagnosis and treatment raise costs, improve quality or become a boutique commodity?”

The other clergyman taking part in the event is Rabbi Elliott Dorff, who teaches philosophy at the American University of Judaism in Los Angeles. He will speak on the topic of “Eugenics, arranged marriages and gene therapy: Responses to genetic disease.” Rabbi Dorff will be joined by geneticist Chris Austin from the National Institutes of Health and a Jewish man who wishes to go only by “Yaakov” to preserve his anonymity as the parent of a young boy with a fatal genetic disease.

‘Far from a cure’
Yaakov told The Chronicle that when his now 7-year-old son was born, the child was diagnosed with “a rare neurological disease, for which, at this point, there is no cure, so it’s considered fatal.”

At that time, Yaakov said, “I decided to shift my career path and try to work in the area of developing therapies and methodologies to help accelerate development of therapies for rare diseases.”

He quickly realized another bitter truth.

“The established, conventional economic model doesn’t support investments in therapy development for a rare disease. There is just not enough population base” for a drug firm to earn back the money it spends developing a treatment, and then to profit, Yaakov said.

That meant that the money Yaakov had raised from family and friends who wanted to help his son was being funneled into basic research on the boy’s condition. And while that is necessary, Yaakov said, it didn’t look like it would lead to any breakthroughs “during the life of my child.”

So more recently, Yaakov said, he’s been working with a group of fellow parents “who are funding and collaborating with a group of researchers, finding ways to use (Food and Drug Administration)-approved drugs and neutraceuticals — which are vitamins and stuff — and develop combination therapies for my son’s disease.”

Good work has already been done, Yaakov said.

“We have made some significant progress in identifying at least some disease modifiers,” he said. “It’s far from a cure. But there are some existing compounds that can help slow down the progression of the disease. And that is something my geneticist told me was impossible when he gave me the diagnosis.

“So I am encouraged. It’s never enough until there is a cure. But I am also realistic. I know we have to build a bridge between here and a cure, but exactly how my son will be affected in the end is a very open question.”

Relevance to everybody
While the upcoming seminar is heavy on Jewish presenters and Jewish-related topics, Dr. Lantos said anyone who is interested in the field of genetics might find it interesting.
For instance, Rutgers University Professor of Sociology Keith Wailoo will discuss the “different cultural responses to genetic testing” among Jews, who are predisposed to Tay-Sachs Disease, and African-Americans, who have a tendency toward Sickle Cell Anemia.

The presenters at the session titled “What does it mean to be told you (or your child) has a bad gene?” are all Jewish, but Ken and Judy Yalowitz are listed as “parents,” and they have been invited to share their thoughts and feelings from that perspective.

“What we are coming to understand about Jewish genetic diseases will have relevance to everybody,” Dr. Lantos said. “What we are learning goes way beyond Jewish diseases to what we think about genetics and personalized medicine, which is the next phase of what medicine will be about.”

‘Genetics, Jewish Diseases and Personalized Medicine’ set Nov. 2-3 at downtown library
A seminar titled “Genetics, Jewish Diseases and Personalized Medicine” will be held Monday and Tuesday, Nov. 2 and 3, at the Kansas City, Mo., Public Library, 14 W. 10th St.
It is funded by The Barton P. and Mary D. Cohen Charitable Trust and co-sponsored by the Center for Practical Bioethics and Children’s Mercy Hospital. Space is limited, and registration is free. Register online at www.PracticalBioethics.org, call (816) 979-1352 or e-mail This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

The complete schedule is available at www.PracticalBioethics.org. Here are the highlights:

Monday, Nov. 2
Monday, Nov. 28:30 a.m. — “Genetic Testing and Jewish Identity — Do our genes tell us who we are?” — Journalist John Entine, author of the book “Abraham’s Children: Race, Identity, and the DNA of the Chosen People”
9 a.m. — “Tay-Sachs and Sickle Cell — Different cultures, different responses to genetic testing” — Keith Wailoo, Rutgers University sociologist
10 a.m. — “Genetic testing from a traditional Jewish perspective — can testing before marriage help?” — Daniel Eisenberg, Thomas Jefferson University radiologist
1:15 p.m. — “Personalized Medicine and the cost of health care” — Rabbi Noam Zohar of Bar-Ilan University and Dr. Stephen Spielberg, Children’s Mercy Hospital pharmacogeneticist
4 p.m. — “Can we redesign ourselves? If so, would we do it well? Thoughts of a genetics consumer” — Journalist and bioethicist David Ewing Dunan

Tuesday, Nov. 3
8:30 a.m. — “Eugenics, arranged marriages and gene-therapy responses to genetic disease” — Rabbi Elliot Dorff, American University of Judaism professor; Chris Austin, a National Institutes of Health geneticist; and “Yaakov,” father of a child with a genetic disease
11 a.m. — “Individuals, culture and biology: what does the future hold?” — Laurie Zoloth, a Northwestern University bioethicist, and Dr. John Lantos

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