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Privacy in the Genomic Age

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DOES YOUR GENOMIC INFORMATION WANT TO BE FREE?


Harvard Professor Steven Pinker

NEW TECHNOLOGIES, NEW DILEMMAS:

Seemingly we are besieged with privacy concerns already in the "digital age" of Facebook, Flicker, and online chat and chatter. And identity theft is a major issue when all that is at play are your social security number and name. The ability to sequence an individual's genome threatens to complicate hugely the threat to privacy.

But not everyone is adopting a defensive posture with respect to genomics and privacy. The "PGP 10" have launched an effort to model the use of genetic information voluntarily to help move science forward in this area. What do you think?

How about these questions: Would you want to have your genome fully sequenced, if you could? Do you want to know? Or do you prefer not to know? Would you make the information on your DNA public? What concerns do you have? Why? Explain!

It seems as if in the very near future, DNA screening will become routine for doctors. It appears they will send your blood away for testing blood sugar, cholesterol, etc, and also for SNPs. What do you think about your doctor having access to this information?

This blogsite posting will come due Monday morning March 15, 2010 at 8:00 a.m.

THE "PGP 10"

"The first ten participants in the PGP, called the 'PGP-10', have volunteered to share their DNA sequences, medical records, and other personal information with the research community and the general public (see here)."

In Defense of Imperfection?

OF HUMAN DIGNITY AND HUMAN HAPPINESS

"There is no gene for the human spirit."

IN DEFENSE OF IMPERFECTION?

In our discussion last week Ms. Beard spoke powerfully about how she wished she never had to cope with epilepsy in her life. She claimed it had had a huge effect on who she was. It caused her enormous suffering. It was an unwanted burden that diminished her quality of life.

We also discussed the future possibilities in genetic engineering. We examined how genomics appears to offer the opportunity to eventually eradicate from our collective gene pool such horrors as Multiple Sclerosis, childhood leukemia, Down's syndrome, congenital heart defects, Alzheimer's disease, and a whole host of other maladies that have plagued mankind for millennium. Is this just more of mankind using reason to understand the physical world around us through science to relieve "unnecessary suffering" and extend life and the quality of life? Is this not just the next stage of evolution -- evolutionary change which is "directed" rather than "random"? As philosopher Frederick Nietzsche claimed in Thus Spoke Zarathustra:

"All beings so far have created something beyond themselves; and do you want to be the ebb of this great flood and even go back to the beasts rather than overcome man? What is the ape to man? A laughingstock or a painful embarrassment. And man shall be just that for the overman: a laughingstock or a painful embarrassment. You have made your way from worm to man, and much in you is still worm. Once you were apes, and even now, too, man is more ape than any ape."

Professor of molecular biology and geneticist Lee Silver from Princeton University put it less colorfully but more concretely:

"Why not seize the power? Why not control what has been left to chance in the past? Indeed, we control all other aspects of our children's lives and identities through powerful social and environmental influences and, in some cases, with the use of powerful drugs like Ritalin and Prozac. On what basis can we reject genetic influences on a person's essence when we accept the rights of parents to benefit their children in every other way?"

Or are we humans "playing God" in "seizing this power" of genetic engineering and doing what we should not do? Might we create more problems than we will solve? What do you think about the prospect of genetic engineering? What might we gain? What might we lose? What about human dignity? Human nature? Would it be better if science had relieved Katelyn of her epilepsy burden? Or, as Katie O'Neil mentioned, might this just be the first step on the "slippery slope"? A world like that of Gattaca? Why? Why not? EXPLAIN YOURSELF!

"THE BOOK OF LIFE"

"We now have the possibility of achieving all we ever hoped for from medicine."
UK Science Minister Lord Sainsbury
June 26, 2000, on announcement of mapping human genome,
a date which will go down as one of the great moments in human history.

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This page is an archive of recent entries in the Genetics category.

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