Ask a Bioethicist: Privacy and Genetics

Wednesday, March 13, 2013

Each week in March, we'll talk about medical ethics with Duke University bioethicist Nita Farahany, who sits on the Presidential Commission for the Study of Bioethical Issues. She'll discuss some of the thorniest bioethical conundrums of our day.

Today's topic: Privacy and genetics. We want your suggestions of bioethical questions we should discuss. Ask your question below and we'll tackle as many as we can.

This complete interview originally aired live on March 13, 2013 as part of a month-long series. An edited version was re-aired on August 2, 2013 as part of a special hour of Ask a Bioethicist in a best-of episode of The Brian Lehrer Show.

Comments [13]

J from Vermont

But is 23 and me accurate? I thought there are some that are more accurate than others - especially in terms of ancestry.

Aug. 02 2013 11:38 AM

Good news , the price of "23 and me" has been lowered to $99, not a sale, this is the new standard price. "23 and me" and me states in their material that NYS will not allow an individual to collect their own saliva sample. This is strange since you can take a HIV test, using a blood sample, mail it in, no problem. The DNA test cannot be used in a court of law for paternity, unless a physician performs it and uses state approved DNA testing labs.
Once you have a doctor involved, you lose anonymity and extra money.
The kit can be bought mail order from "23 and me" however you MUST REGISTER IT ON LINE before mailing it in, otherwise there is no way of tracking your DNA, i I believe you can use whatever name you want , as long as you remember the identifying and unique name and the password for your sample, use a TOR system and not worry about your identifying info. Or go to a library,public computer set up
The paper work states that if you want it collected in NY and mailed from NY ,You must have the sample collected by a physician,then they will send the self addressed postage paid box to "23 and me" the doctor will receive your results and contact you. This will cost you more money, compared to a path ride to NJ or metro north to Greenwich Ct. Plus i believe you can ensure more anonymity if you do the process yourself. You pick a unique identifier and password, no need to use your name, just remember your identifier and password when you register it, or you will have to buy A new kit and star all over again.
You do have to sign an affidavit that the sample was collected outside NY and mailed from outside NYS. it is included in the box.
I have a kit that i need to mail in, i would have done it a month ago, but this NY thing has put a clog in the process.
I hope to have mine mailed in via Greenwich ct this week.

Mar. 13 2013 11:43 AM
lin from nyc

I can see using genetic testing to find out what are possibilities in one's life of getting a major illness. I can also see why it's necessary to have this infomation so one can plan and not to pass it on to an offspring; however, has anyone discussed where this preoccupation with creating the "perfect" child with the "perfect" genes and finding the "perfect" genetic match to create this child, is leading to in our society? If a loving and caring partner or potential partner does have a harmful gene which could be passed on to a child, why not consider adoption rather than moving on to another partner? Is it not worrisome that this mind set can lead us to the 21st century's version of the search for the Aryan race?

Mar. 13 2013 11:24 AM
Herman from LIC

Asparagus Gene & Smell

As it turns out your guest was a little behind in her science. It seems further testing has shown that some people can't detect the sulfur smell in their urine after eating asparagus and some people don't produce it.

From Science Daily:
"Addressing this mystery from several angles, scientists from the Monell Center first used sophisticated sensory testing techniques to show that both explanations apply: approximately eight percent of the subjects tested did not produce the odorous substance, while six percent were unable to smell the odor. One person both did not produce the odor and was unable to smell it."

Mar. 13 2013 11:06 AM
Tom from Park Slope

I'm the guy who called in after finding out that he had some Ashkenazi genes, and I'm surprised to hear about the problems using 23andMe in New York State. That didn't come up for me at all, and I used my Brooklyn address.

Anyway, the whole experience has been interesting, but it's somewhat tempered by the fact that I'm frankly not sure how reliable all this stuff is. Novelty only? Directionally reliable, but fuzzy? Rock solid fact? I really don't know.

Mar. 13 2013 11:05 AM
Erin from UES

The key phrase which has not yet been mentioned is genetic counseling! There is a whole cadre of trained healthcare professionals working in medical genetics with specific training in the psychosocial aspects of genetics and genetic testing ( Individuals seeking information about their genetic material may benefit from meeting with a genetic counselor to discuss in advance the risks, benefits, and limitations of the test. This applies whether it be for targeted genetic sequencing/mutation analysis, whole genome or exome sequencing, or direct-to-consumer testing. Knowledge is power, and genetic counselors aim to help make the decision-making process and test information meaningful for the individual and/or family.

Mar. 13 2013 10:50 AM
Barry Solow from Inwood, Manhattan

"Anna from UWS": When I tried to purchase a testing kit from 23andme, a popup informed me that they aren't licensed testers in NY but suggested that I could collect my sample outside of NY and submit it with an affidavit affirming that the sample had been collected out of state. I THINK it was also necessary to send the kit outside of NY...but you could specify a NY address to which results could be sent.

Mar. 13 2013 10:48 AM
Regina from bay shore

my child was born with neroblastoma, she is fine now, 2 years off chemo. But I am terrified about having another child, can that cancer show in a test? I have been gene tested for breast cancer and ovarian cancer and am fine.

Mar. 13 2013 10:43 AM
Anna from UWS

I tried to use 23andMe and discovered that NY State residents cannot send in saliva samples without going through a doctor.

Mar. 13 2013 10:43 AM
juan pena

Should the sale of body parts be allowed? And then should those parts go to those who can pay for them? This has been going on for a long time in other countries, legally.

Mar. 13 2013 01:21 AM
JP in NJ from NJ

Can the pod cast be posted? I'd love to hear what I missed.

Mar. 12 2013 03:55 PM

Privacy and Genetics??
Privacy and anything? There is little privacy today and less tomorrow. That’s your 15 minutes of fame that u wanted

Mar. 05 2013 03:46 PM
Janet from Forest Hills

This may be more relevent another week: I want to bear and raise a daughter with my own genes - in vitro parthenogenesis. How soon might this be possible, both legally and medically?

Mar. 05 2013 11:03 AM

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