Disease Risk: Family History Trumps Genetic Testing To Predict Disease, Study Shows

WASHINGTON — Make Grandma spill the beans: Uncovering all the diseases that lurk in your family tree can trump costly genetic testing in predicting what illnesses you and your children are likely to face.

It may sound old-fashioned, but a Cleveland Clinic study comparing which method best uncovered an increased risk of cancer helps confirm the value of what's called a family health history.

All it costs is a little time questioning your relatives, yet good family health trees are rare. A government survey estimated less than a third of families have one - and time-crunched doctors seldom push their patients to remedy that.

"I view family health histories as back to the future," says Dr. Charis Eng, a cancer geneticist at the Cleveland Clinic's Genomic Medicine Institute. "It's the best-kept secret in health care."

Holiday gatherings can be a good chance to gather the information, as can reunions or even funerals. The U.S. Surgeon General operates a free website - - that helps people create a family health history and share it electronically with relatives and their doctor. https://familyhistory.hhs.gov

However you do it, get the scoop on both sides of the family, says another study of 2,500 women. Researchers found that women not only know less about the health of their paternal relatives, they tend to dismiss the threat of breast cancer if it's on Dad's side.

"It's a risk no matter what," says Dr. Wendy Rubinstein of Chicago's NorthShore University Health System, who presented the research last week at a meeting of the American Society of Human Genetics.

Far too often, a family health history consists of whatever you happen to jot down on that clipboard in the doctor's waiting room. Mom hasn't confided her soaring cholesterol? Can't recall what killed Aunt Mary? Don't realize that the hunched back of Grandma and her sisters could foreshadow your osteoporosis? Or maybe Dad never mentioned that in his 40s he survived the prostate cancer that killed his own father.

Looking for patterns of familial illness can predict someone's brewing health risks, so gaps can be a problem.

How does a good history compare with those online genomic testing services - sold without a doctor's prescription for hundreds of dollars - that analyze DNA glitches and predict people's predisposition to various diseases?

To find out, the Cleveland Clinic's Eng recruited 44 people - 22 patients in her family cancer clinic and their spouses - for a family health history and a saliva test from one of those genomic services, Navigenics, to calculate their risk for colon cancer and breast or prostate cancer.

Both approaches classified about 40 percent of participants as having above-average risk - but they picked the same people only about half the time. For example, the genomic screening missed all nine people with a strong family risk of colon cancer, five of whom Eng's clinic gave extra scrutiny to prove they carried a specific gene mutation.

"A patient might have done this testing and been very reassured and not come to medical care," she told last week's geneticists' meeting.

On the other hand, Navigenics listed eight men at risk for prostate cancer when their family history predicted a risk no higher than average.

Why the difference? No matter the brand, genomic screening takes a broad look at DNA variations, including some that scientists aren't sure play a big role. Yet it often doesn't include high-profile gene mutations that are linked for specific diseases and can require more specialized testing, Eng explains.

Navigenics didn't return a call for comment.

"Family history remains the best genetic tool we have, but health care providers are not taking advantage" of it, says Dr. Maren Scheuner of the Veterans Affairs Healthcare System in Los Angeles, who is leading a pilot project to add family cancer histories to the VA's electronic medical records at two area clinics.

Popularity may be growing. The surgeon general's office counts nearly 30,000 new visitors a month to its "My Family Health Portrait" Web site since summer, about a third of whom return, suggesting they're compiling an electronic family health tree.

Chicago's Rubinstein, who is testing a next-generation tool, found that women's newly created family health histories include much more information than was in their regular medical charts - even if they did need a nudge about the paternal side.

"It's not uncommon to think, 'I look like one parent, that affects the illness I'm going to get,'" Rubinstein says. "Generally that's not the case."

Because genes seldom are destiny, a family health tree also should reflect shared environmental or lifestyle factors that can further affect an inherited risk, says James O'Leary of the nonprofit Genetic Alliance, which just won government funding to help spread family health histories to community health centers that serve the poor.

"Collecting your family health history isn't just about knowing, it's about making healthy choices," he says.

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EDITOR's NOTE - Lauran Neergaard covers health and medical issues for The Associated Press in Washington.

Comments

[onwisconsin]

01:43 PM on 11/12/2010

It is tough when you are adopted. I am adopted by my dad but my mother is my birth mother. I don't know my birth father's family history very much. I knew his mother more than him but I didn't ask these questions. I've survived cancer, an aneurysm, significant other health problems including infertility from PCOS, anaphylactic allergic reactions to foods and environmental toxins.

All I know about my birth father is that he is significantly overweight, has heart issues and has survived some sort of cancer. I am not going to contact him because there was abuse there and he also gave me up. Why would I?

Still, I wish I knew. I don't have heart issues and have low blood pressure. Maybe I've dodged that bullet with the proper diet and exercise. Still...

[AWoolst]

05:41 PM on 11/11/2010

To chime in with what Gaye said, I am adopted. By the time I was 23, I had already had serious surgery to remove a benign tumor and given birth to my first child.

When I reunited at the age of 25, it was then that I discovered that brain cancer, breast cancer, skin cancer, a rare blood disease, diabetes and other serious conditions run in my family.

One could say that one has heart disease like their father does, not from genetic predisposition, but from learning the father's eating habits by watching him. That doesn't help the many family members I've had who have suffered from cancer, and had an increased likelyhood of doing so because other biological family members have.

Genetic secrecy in adoption is unacceptable and puts lives at risk. People who are willing and able should have the ability to speak to one another without government intrusion.

[Gaye Tannenbaum]

09:24 AM on 11/11/2010

With the holidays approaching, this is an ideal time to promote obtaining family medical histories (as this article does). Not only does having a detailed updated family medical history show risk of disease, it also allows your doctors to efficiently tailor screening and treatments.

November is also National Adoption Awareness Month, and for six million US born adoptees (and their parents, children, grandchildren and doctors), obtaining a detailed up-to-date family medical history is an unattainable wish. Any family medical histories that were taken at the time of adoption are horribly out-of-date. While everyone else is encouraged to “ask Grandma”, the laws of 44 states (and DC) prevent US born adoptees from even knowing who “Grandma” is.

So called “mutual consent registries” have been abject failures. Even after 25 years, over 90% of New York’s registrants are still waiting to be matched. A simple, but incorrect, assumption is that most birth parents do not wish to be contacted. However, data from other sources actually indicates that the vast majority of birth parents DO WANT CONTACT from their relinquished sons and daughters. Clearly there is a major disconnect between assumption and reality. See "For The Records I and II" at www.adoptioninstitute.org

Why should an adult, who happens to be adopted, be required to petition the court or pay thousands of dollars for a state-approved intermediary (where available) while others can simply “ask Grandma” at the holiday dinner table?

[onwisconsin]

01:54 PM on 11/12/2010

When people are adopted as children through adoption agencies, family medical information should and must be shared. However, many children are adopted, as I was, by step-parents after bitter divorces. I've talked to many people who were adopted this way and have heard the same story over and again: the refusal to talk about or engage with the former parent. It has left many of us without any genetic information at all. In my case, my mother wanted to forget I had another father and pretend as if he had never existed. She was so angry at him that our lives were full of times where we couldn't talk about the elephant in the room. It was confusing and sad, made more so by my age and feelings of abandonment.
The point is that children who have lived this kind of experience rarely find any sort of way back to find out any medical information. They continue to live with only 1/2 of their story to go forward. In our case, because of incest, we would not contact our birth father. When we tried to contact his family, we were rebuffed because they thought we wanted a share in an inheritance, which had never even occurred to us. We even offered to pay for the information, to have an intermediary come and interview the older family members just to get a medical profile and we were still told no. Divorces can cause a lot of enmity.

[AWoolst]

06:46 PM on 11/15/2010

What my mother knew about her history as a teenager is a lot different than what she knows now. None of the cancers were present 25 years ago that I know of. An adopted person having the right, just like everyone else does, to know the name of their natural parents and seek contact as their own private business, and at least be able to look up obituaries to learn why natural family members died. No adopted person, step-parent adoptee or any other with an official decree of adoption, retains the legal right to any information, or names, of natural family members. Although some types of adoptions are more likely to have access to names (due to be raised by natural family or being older when they were adopted). A lot of us do not. And it's all based on decades old laws still on the books today bent at hiding illegitimacy.

[maguro 01]

06:40 PM on 11/08/2010

This article makes a very important point, People write articles about privacy and DNA and what insurance companies in general are going to do with such information. Yet what is more important is that insurance companies going forwards will easily be able to construct family trees from standardized electronic medical records and our practice of giving even infants national ID numbers (SS numbers). We could also expect such information to 'leak' over into other areas like employment and mortgage credit especially as US data centers migrate out of the US.

The benefits of the standardized electronic records plus the future promises of individual medical care based on DNA information are no doubt real. I used to think that if we really had a market in medical care/insurance - not one bought in Washington and the state capitols - that our care system could be efficient and work well. But no more. It is true that our system is corrupt. In 2009 into next year insurance and drug companies will have dropped around a billion dollars in Washington and just added it to our bills. But even without that, insurance companies are always trying to get out of the insurance business in quest of profits. It's their nature.

Single payer is the only way forward. Unless you're a CEO.

[Martin 27514]

05:16 PM on 11/08/2010

Familial associations are not genetic; they result from our early diet/bowel habit/patterns of exercise.

Disease-susceptibility starts with breast or bottle feeding. Breastfeeding protects you from type 1 diabetes, chronic lymphoblastci leukaemia and asthma .... among many others.

www.western-diseases.com

[merlinspinoza]

04:42 PM on 11/08/2010

i've been advocating the notion that habits in common in the family is more predictive of sickness rather than genetics in common

its not suprising that family health history is better than genomics

most sickness is not caused by faulty genetics ; only maybe 5%; 80% of sickness is caused by various types of stress ; like Sherry Rogers MD said years ago : " 95% of cancer is diet and environment "

bad habits affect genetic expression and healthy happy habits affect genetics beneficially

[Willard365]

05:28 PM on 11/08/2010

Is this the same Sherry Rogers: http://www.casewatch.org/board/med/rogers.pdf

[JonDavidH]

03:42 PM on 11/09/2010

Correct.

Both my Grandfathers have passed away. One from excessive Tobacco consumption, the other from excessive Alcohol consumption.

A physician at my College automatically determined OK you are at high risk for High Blood Pressure/ Heart problems as well as Diabetes/Metabolic disorders.

False.

Yes they had these diseases, this is true, but did it occur naturally? No. Although on their death certificate it says "Deceased from Natural Causes" the cause was clearly heavy, chronic substance abuse, plain and simple. Both of them abused their respective substance for 20+ years before dying of organ failure.

In contrast, Mom and Dad are just fine (Dad has high cholesterol, but that is due again to a diet high in cheese and eggs for 20+ years). While some extremists may advocate the problems merely skipped a generation, that is unlikely.

Men remain more susceptible to disease in general due to chronic substance abuse and less discretion in diet due to lack of societal pressure regarding appearance. (A man is still referred to as "hefty" as a term of endearment while "pleasantly plump" for a woman still implies a sardonic tone)