A Medical Crystal Ball

Listen to this 'Talk of the Nation' topic

If you look closely, you might see your future.

hide captionIf you look closely, you might see your future.

Source: comradedavros

Our bodies are full of untold secrets about our futures. Turns out, predispositions for various diseases are plain as the nose on your face... If only someone takes a look at your DNA. OK, that's simplifying things, but there are now a variety of tests you can take to see if, say, a family history of breast cancer means you'll get it too. Or if you're going to pass cystic fibrosis on to your kids. Have you gotten tested? Do you want to? How much do you want to know about your medical future? What if one day, there's a test that will tell you how long you'll live (barring accidental death, of course)? Would you want to know? Is there a difference between knowing for yourself, and knowing about what genetic markers you could saddle your kids with?

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I am awaiting an appeal from my employer to see if they will support my testing for BRCA1 & BRCA2. If they will not, I can pay for the testing myself. However, if I test positive, possibly my doctor will recommend palliative surgery. Then, I will be required to go back to the insurance board and ask them to pay for the surgery. I have undergone genetic counseling and the counselor recommends the test.

Sent by Deann (pronounced Dee Ann) Owen Lewis | 2:17 PM | 10-16-2007

Does this test also tell for fronto-temporal dementia? My father was diagnosed with early onset dementia this year at age 56, he started showing signs at 55. Where would I get this testing done? Does my primary care doctor have the ability to perform this test? Where can I find more information on this testing?

Sent by Jodi Palmer | 2:17 PM | 10-16-2007

As a two-time breast cancer survivor, I would really like for my Daughter to have testing to determine her risk so she can make decisions about her future, but I hestitate because I don't want those results to follow her medically her entire life and because that knowledge might preclude her from getting medical insurance in the future.

Sent by Sharon McBride (San Antonio) | 2:24 PM | 10-16-2007

How do you suggest stopping insurance companies from not insuring a person or dropping them if they're tested? They regularly drop people for pre-existing conditions. If you aren't tested, you at least have plausible deniablity. I just don't think it's worth the chance. Tested when you're born for Alzheimers by your parents and denied insurance at 21? Or have your entire family insurance cancelled while you're still a baby because you test positive? This is happening now - it's not a "what if". I would track family members with conditions within the family.

Sent by Shawn | 2:26 PM | 10-16-2007

my sister died of breast cancer at 45 - I'm 46 and I believe that unless you are willing to have a pre-emptive double mastectemy (I'm not), there's nothing to do with the information that I HAVE the dreaded gene other than what I'm doing already (taking care of my health, alleviating stress, etc.).

Sent by Nancy | 2:27 PM | 10-16-2007

Hi Neal,
I had a child at 46 years of age. I went to a doctors office that specialized in older women. I was told I would need to have tests for defects of the child, but I refused to have these texsts. I asked them what they would suggest if certain defects appeared? They had no answer for this and agreed to forego the tests.

Sent by Jan Wann | 2:30 PM | 10-16-2007

It is reasonable to test for a disease you can prevent or treat. If this canno`t be accomplished (like Alzheimer`s disease) what is the benefit of this information, other than future anxiety and pain

Sent by O Alassi, MD | 2:35 PM | 10-16-2007

There is a great book called Choosing Naia about a couple that finds out they are pregnant with a child with down syndrome and has to decide if they will have an abortion. It follows their journey through all of the options & advice presented by modern medicine and genetic counseling. I have personally experienced great joy having a member of the family with down syndrome. I have seen many reports suggesting that doctors often present a prenatal diagnosis of down syndrome as something sad for the parents, leading to a very large percentage of abortions in these cases. Of course, given my personal experience I find this troubling, since it encourages the widely held view that the advent of this syndrome is a tragedy.

Sent by John Vrakas | 2:41 PM | 10-16-2007

Thank you John Vrakas! I was trying to phone in all morning. As the mother of a little girl with Down syndrome, I can say that she brings us only joy--not the "problem" and "abnormal" situation so described on the show this morning. It was nothing we planned, nothing we prepared for, but since she joined our family, we have grown in ways previously unimaginable. I find it heart wrenching that of pregnant women who receive a positive diagnosis for DS in-utero, over 90% choose to terminate. I strongly believe that both physicians and geneticists need to required to relay up-to-date, accurate information to patients faced with a difficult decision, rather than suggesting outmoded information as to how a child's life with Down syndrome might be, i.e. never walk or talk, always ill, etc. You can learn more about Down syndrome on my blog: www.parham.org.

Sent by Amy Parham, Los Gatos, CA | 3:07 PM | 10-16-2007

in the long run, we're all dead.

Sent by kate | 3:10 PM | 10-16-2007

At age 31, my daughter was diagnosed with breast cancer, with two lymph nodes already involved. She was immediately sent for genetic counseling. After excellent counseling, she knew she needed to have the test. She carries a BrCA1 gene mutation, which we now know was inherited through my father (and me). Facing almost a year of tough chemo and surgery followed by a very high lifetime risk of a new cancer in her other breast, she made the only decision that made sense. She had the healthy breast removed along with the diseased one. Knowing that with BrCA1 she had an increased risk for ovarian cancer, and also knowing that removing her ovaries would further reduce her (now small) risk of a new breast cancer, she had a total hysterectomy done a year after finishing cancer treatment. It has been a VERY hard journey to have to take, but she is satisfied that she is doing everything she can to stay healthy for her daughters, who were 1 and 3 when she was diagnosed. At 4 years past her diagnosis, she is thankfully thus far cancer-free. After being there through my daughter's experience, my own breast cancer diagnosis last year seemed almost routine. As a BRCA1 carrier, I knew I wanted a bilateral mastectomy even though lumpectomy was an option. I had already had a hysterectomy 12 years earlier. My other child, also a daughter, and my half-sister also have the same mutation. Both have had hysterectomies also. My daughter plans on a prophylactic mastectomy in the next few years. We have all found tremendous information and support through an organization called FORCE - Facing Our Risk of Cancer Empowered. It is for anyone concerned about familial breast or ovarian cancer, and exists so that we call all be empowered by information.
It has a wonderful website,
www.facingourrisk.org
and I recommend that ANY person concerned about these cancers (consumer or professional) check it out. In our family there are five children age 7 and under who may have our BRCA1 mutation. It is essential that we support research and share information for the sake of these dear ones' futures.

Sent by Carey, Ohio | 3:33 PM | 10-16-2007

Testing during prenancy: my son was predicted to have spina bifida (he was perfectly normal) we did not consider abortion and felt it was good to know to get ready for any problems

Sent by Toni | 6:45 PM | 10-16-2007

My father, age 60, was diagnosed with early-onset Alzheimer's disease six years ago. The doctors tell us that the sooner you find out you likely have the disease, the sooner they can get you on the newer, stronger drugs that slow the symptoms. My father was diagnosed fairly early on and was given longer than they expected before his mental function started noticeably slowing. Having seen what he went through, what my mother has gone through financially and mentally, I would love to be able to test to see if I have it. If I'm going to develop the disease, I want to be on medication, plan financially, enjoy my life even more and do the things that I may have put off had I not known of the future. I do think you have to be ready to face the consequences of learning the information though, so counseling of some sort should be recommended for those who something life-altering.

Sent by Kate | 1:33 PM | 10-17-2007

In response to Shawn : Not all of us have the luxury of knowing what diseases run in our families. As adoptee, I have no legal right to my medical history. If and when I can afford it, I will seek out this testing regardless of what insurance companies will do with the results. I believe it is my right to know.

Sent by Kate | 2:10 PM | 10-17-2007

I am a 46 year old woman with Fascioscapulohumeral Muscular Dystrophy (FSHD). My brother and I are the first generation in our family - that we know of - to have this disease. Nearly 20 years ago my family and I donated blood samples to determine the genetic marker for this disease. I did not have pre-natal testing done with my two children, as there was no such thing available to us at that time. Both my children have this disease. They are adults now. We have discussed prenatal testing, and I hope that they both know enough about the difficulties of living with this disease to ensure that they do not pass it along to another generation. I believe that my children were destined to be my children, and that with prenatal testing I would have had the opportunity to eventually pass along a different and more healthy body to them.

Sent by Barbara Williams | 5:47 PM | 10-17-2007

There's a group at the UCSD Radiology Department in La Jolla, CA already doing routine predictive screening for neurodegenerative diseases such as Alzheimer's with the same, if not better, success in distinguishing AD from MCI and normal patients. A neighbor of mine in Coronado was referred to them and from a normal MRI processed using this new method she found out that she did NOT have Alzheimer's, which is what she and her family had feared most.

Sent by Emily Fitzgerald | 12:28 AM | 10-18-2007

There's a nonprofit group affiliated with Portland State University called Geneforum, which is seeking personal stories like this for educational purposes. I would encourage all of you to share your experiences.

Sent by Genetizen | 6:27 PM | 10-19-2007

The subject of genetic testing is being discussed regularly in the geneforum blog called Genetizen. Check out www.geneforum.org. We DO respond to questions and will do so confidentially, if you wish.

Sent by Marie Godfrey, PhD | 2:15 AM | 10-20-2007

I am quite intersted in this new test for Alzheimers as my mother has been diagnoted with vascular dementia (determined by a CT scan)with "some Alzheimers" (determined by the observation of a geriatric assessment team of the level and speed of her montal decline). Planning for her future care needs would benefit from know if she has a dual diagnosis.

Sent by Kathy | 12:38 PM | 10-22-2007

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