Wednesday, October 22, 2008

They say "It's All In The Genes" but do I really want to know?????

The Coriell Personalized Medicine Collaborative
“It’s all in the Genes: Researchers Uncover your Genetic Profile”

Would you really want to know what is down the road for your health?

Genome Profiling Project…..This innovative science takes a sample of my saliva and tests the DNA for certain genes that are associated with specific diseases. Some prominent healthcare institutions are taking part in this groundbreaking project. Healthcare facilities such as Fox Chase Cancer Center, Virtua Health Care, and Cooper Medical Center have thrown their hats in the ring on this one.

I have some concerns about this. Let me tell you about them:

Accuracy: Who says these tests are accurate? Have we done any studies up until now that prove that these tests would be reliable? Would I be worrying unnecessarily about a disease that I may never acquire?

Confidentiality: The Coriell Institute for Medical Research seems to have solved this issue by keeping participants’ medical data in an anonymous form to protect their privacy. There is absolutely no way a person’s identity could be revealed? (heard that one before!)

What if there is no diabetes gene, can I still get diabetes? Or….can I err on the side of probability of not getting it based on the absence of a specific gene?

What does it mean if they find a gene that is “medically actionable”?
According to what I’ve read the genetic makeup that will be revealed will be on that which is “medically actionable”. In other words, if there is no cure for the disease (or treatment) then it will not be revealed to the participant? So I won’t know if I am a potential candidate for Alzheimers?

What about the future? Some experts say that this will be standard at birth and that everyone will have a genome mapped at birth and it will be part of your medical record. Although they also state that physicians will need to have a patient’s permission prior to accessing the data.

It’s a win-win situation according to Dr. Dwyer from Virtua Health Care. Dwyer states that “the physician is more attuned and patients would be more engaged because they now know they have a risk. That combination can change behavior” (or kill a person with worry).

This is obviously not for everyone. I am actually considering becoming a participant in this groundbreaking study. The thing that is holding me back is when I go to hit that key to tell me if I have the genetic makeup to develop diabetes, will I worry myself right into a full blown case of diabetes? My other reservations are that I’m downright frightened that what I may find out may be more than I want to handle at any given moment. Life is hard enough dealing with our every day stressors. Now, knowing that I could develop breast cancer, heart disease, etc. down the road will just add more to my stress level and then I’ll probably just have a massive heart attack and it will be over anyway….so what’s the point?

For more information on this project, go to


Anonymous said...

very interesting article. Obviously
this will not be for everyone whereas some people will just have to know.

Anonymous said...

this will have a great affect on the choices people have in the wonders of their gene pool and cchances they have of a disease what preventions or treatments will be necessary to extend their lives.

Anonymous said...

Before you participate in this particular study, be sure your expectations are low--read the consent form carefully, and ask pointed questions about security, deidentification of samples, etc. Get solid answers about what "results" you will gain from participating in this research (I believe they're only reporting on three specific conditions).
Above all, remember, this project is science-based, not medicine-based.

Anonymous said...

I am a participant in this study. Results of Coriell's genetic testing will be released over time as genetic variants are approved by their advisory board. Initially, participants will learn about a handful of genetic variants but the board meets at least every 6 months, so there will be updates over the coming months and years.

It's true, currently the study is conservative and only reports back genetic variants that are potentially “medically actionable,” meaning there are actions or interventions that can be taken to reduce the risk of the health condition. Perhaps this will reduce the anxiety...