Personalized Medicine leaves public confused
The ESRC Genomics Network (EGN) brings together the world’s largest concentration of social scientific research in this field. One of the numerous topics this organisation has looked into is the whole subject of people’s perception of Personalized Medicine.
In summary Personalized Medicine is about treating patients according to their individual genetic make-up. Medicine has traditionally been a ‘one-size fits all’ model but now with advances in genetics, pharmacogenetics, nutrigenomics etc, doctors now have the tools to start to tailor treatment programs to their individual patients.
However, Prof Brian Wynne and Elisa Pieri of the EGN have used focus groups to get the opinions of ‘hard to reach’ sections of the public such as senior citizens, young people and parents of young children as well as members of ethnic communities.
Their findings show that members of the public showed strong concerns about the increased and often burdensome levels of responsibility for people that would come from being able to discover they were susceptible to, or had early signs of a particular disease and about the necessary genetic testing it entails.
Professor Wynne said “Contrary to much of what is written and said about personal medicine, members of the public highlighted how such promised options would impact and place strains on their families and relatives as well as potentially leading to stigmatization. They were worried that it would limit their access to key services, such as insurance, mortgages, some medical coverage and potentially even impact on their employment opportunities.”
It is most obvious that there is still much work to be done in allaying individual fears and in my opinion this can only be achieved by all organizations affected by these advances such as government, industry and science ‘joining up’ and singing from the same hymn sheet. This should then be overlayed through information and education programs for patients which demystify the whole subject.
Elaine Warburton
A Blood Test, Bioscience, and a Business Plan
May 22, 2007 by Kristina Chew, PhD
Filed under Health
Pediatric Bioscience, LLC is a research start-up that was formed by parents, researchers, and (according to its website) “experienced business leaders with the goal of bringing to market diagnostics and therapeutics to diagnose and eventually treat children with autism or autistic spectrum disorder (ASD).” As of today, the company has teamed up with the state of California and the UC David MIND Institute to create a blood test to diagnose autism in children and in parents. The May 22nd Sacramento Business Journal notes that the research will be led by a neurology professor from the UC David School of Medicine, Dr. Frank Sharp.
An article in the July 22nd, 2006, Sacramento Business Journal, describes the blood test that Pediatric Bioscience hopes to develop. As the company’s CEO, Dr. Thomas Anderson (a “seasoned biotech enterpreneur,” according to their website, puts it,
Researchers at the MIND Institute (short for Medical Investigation of Neurodevelopmental Disorders) discovered higher concentrations of certain kinds of immune system proteins called antibodies in the mothers of children with autism compared to mothers of children who do not have the disorder. The antibodies attack proteins in the brains of fetuses, though the scientists do not know which kinds of proteins, Anderson said. He wants to develop a test that would measure those antibodies in pregnant woman and test for biochemical markers in young children.
Pediatric Bioscience has licensed three patent application from the MIND Institute, with the plan to develop diagnostic tests. Or, as CEO Anderson puts it, “‘Now it’s out of the hands of an academic group that wants to discover things and into the hands of a company that wants to develop things.’” That is, the research done by scientists—an “academic group,” as Anderson rather casually puts it—-is going to be in the “hands” of a company (that is, of a business) that “wants to develop things”–namely, the aforementioned diagnostic blood tests for autism. Diagnostic blood tests that can be marketed and bought for a price.
There is already a market out there for genetic tests, and my friend Dr. Hsien-Hsien Lei reviews some of these tests on Eye on DNA. The tests in particular are offered by DNA Services of America, which has recently partnered with a company named Salugen, which offers “nutritional gene testing and DNA-customized nutritional solutions”—that is, nutritional supplements (”nutrigenomics,” according to its website). As Dr. Lei writes, “How do consumers know the genetic profile they’re given isn’t somehow being tweaked to sell them a nutritional supplement?” How convenient that one company offers supplements that can exactly suit the nutritional deficits and so forth as discovered via the genetic testing of another company (and that the two companies are partners……)
As the May 22nd press release notes, “Anderson founded Pediatric Bioscience last year to bring autism diagnostics and therapies to market”—how closely might the therapies (and other “things” that the “company” will develop) be tailored to the test? Or, to put the question another way, as we find out more about autism and the biology of autistic persons via research, to what ends are we putting that research?
At-Home DNA Tests Easy as Apple Pie
On March 1, Senators Gordon Smith and Edward Kennedy introduced to the Senate the Laboratory Test Improvement Act (S. 736) which will ask that direct-to-consumer DNA tests go through FDA assessment for accuracy and reliability. A public database is proposed that would contain information on FDA approval, laboratory certification, and whether the test has any clinical validity to diagnose or screen diseases or conditions and whether it can be used to make decisions about medical care.
Some of the concerns raised about at-home genetic testing:
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More is UNknown about genes and their function than IS known. But I would counter that to say that for genes, such as BRCA for breast and ovarian, we know enough to predict a person’s risk fairly accurately. Is it fair to lump all genes together?
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No one-on-one counseling is available for direct-to-consumer tests. This service varies between companies so if you’re uncomfortable not having access to a trained genetics professional, only purchase tests that give you a toll-free access number or email. Or if strict privacy isn’t a concern, you could always take the results to your private physician or genetics counselor and ask for help interpreting them. Keep in mind that not all physicians are trained in clinical genetics.
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Medical privacy may be violated when results are posted online. A moot point when we’re moving towards electronic medical records (EMR) and so many of us purchase products online with credit cards.
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No oversight. I have to agree that this one is a true concern. Almost anyone can create a genetic testing company as long as they have a laboratory that can perform the tests. This is why it’s important to do your research as well as keep in mind that if a company is doing a hard-sell for you to purchase supplements or other “accessories” for your health, there’s an ulterior motive to report your genome as having deleterious mutations.
As with all medical services, there are good apples and bad apples. And even though we’re calling all at-home DNA tests “apples,” there are actually many different varieties. Nutrigenomic testing and paternity testing cannot and should not be likened to disease or susceptibility testing.
Suracell: Personal Genetic Health
Nutrigenomics hasn’t been on my radar much lately until today when I discovered the Suracell Inc. Blog written by COO/CIO Derek Hornby. Suracell offers a 3-part program:
- Science – DNA analysis
- Repair - nutraceutical formulations
- Core Nutrition - AM/PM nutrition formulas
Both the formulations and formulas are vitamin supplements. The formulations target specific organ systems such as heart & vascular health, bone & joint health, and blood sugar and body fat control while the “nutrition formula” is a horse pill* made-up of over 70 vitamins, minerals and enzymes – one for the morning, one for the evening. Can’t say I’m too keen on taking so many vitamins on a daily basis given recent data published in JAMA from a meta-analysis of 68 studies that showed vitamin supplements to be ineffective at best, deadly at worst.
The idea of using DNA information to personalize nutrition and diet recommendations is controversial to say the least. In July 2007, Representative Gordon Smith of the Senate Special Committee on Aging called the nutritional genomics industry, “a fradulent mutation” of genetic science. The Government Accountability Office (GAO) said in their report that home DNA tests are unreliable and misleading.
When considering the landscape of unqualified health products available, I’m not sure nutrigenetic testing is any more misleading than all the other crazy fitness and diet stuff you see on TV. I don’t see the Senate kicking up a fuss about Sole Detox Pads for cleansing your body of harmful toxins or the Vibro Power Belt for slimming. Granted, the idea of collecting DNA causes more anxiety considering issues of genetic privacy. I hope consumers of nutrigenomic tests realize the risk when they apply buccal brush to cheek. (Although you could simply order a test anonymously.)
The Five Tenets of Nutrigenomics
According to Dr. Jim Kaput at Nutrigenomics: The New Science of Genes, Nutrition, and Health Symposium.
- Improper diets are risk factors for diseases
- Dietary chemicals alter gene expression and/or genome structure
- Influence of diet on health depends upon an individual’s genetic makeup
- Genes regulated by diet play a role in chronic diseases
- “Individualized nutrition” – diets based upon genotype, nutritional requirements and status – prevents and mitigates chronic disease.”
He believes that nutrigenomic products will be developed that will make everyone healthier, reduce their need for medical care, and thus save consumers money. He stopped short of saying, “Invest in my company.”*
*Just kidding.
PR Newswire, February 13, 2007
Photo: eschipul
Tags: jim kaput, nutrigenomics, nutritional genetics, nutrigenetics, genetics, genes, genome, dna, diseases, illness, health, diet
Nutrigenomics Under Scrutiny in the UK
Following in the footsteps of the U.S. Government Accountability Office (GAO), Dr. Paula Saukko at Exeter University will be conducting a study funded by the Wellcome Trust to see how nutrigenomic tests are marketed and come up with some recommendations as to how these tests should be regulated.
Dr Paula Saukko:
In the USA there are claims you can make your children more intelligent by tailoring their diet according to their genetic make-up. There is also the ‘DNA diet’, which claims you can lose weight, tone up and even live longer by following advice based on analysis of your DNA. These tests are available over the internet so there’s nothing to stop the British public from buying them also.
Nothing to stop people except common sense and logic. If you’ve got the spare cash lying around for a nutrigenetic test, why not? Just treat it with as much skepticism as you would any other vitamin supplement or magazine quiz on health.
More at Guardian Unlimited.
Tags: nutrigenetics, nutrigenomics, nutritional genetics, genetic testing, dna tests, wellcome trust, paula saukko, genetics, genes, dna, diet
DNA is as Sexy as Jennifer Garner
Don’t you just love how celebrities can be worked into every conversation? 
In this case, The DNA Diet: The Weight Plan That Works Best For Your Genes shares space with stories on the Confessions of a Man-Eater and Ultra-Pretty Dresses (One Will Fit You Perfectly) on the front cover of ELLE’s January issue. Does this mean genetics has made it into mainstream consciousness that usually doesn’t care about anything but the Spring fashion preview?
So I exaggerate because I enjoy reading Vogue and one of my favorite reads is eBeautyDaily. And I’m happy to see that beauty and fashion magazines are paying attention to the new market, which targets DNA for everything imaginable including nutrition and skin care.
In Maggie Bullock’s Analyze This (no link available yet), she asks, ” Will nutrition and DNA-repairing creams change my genetic destiny?” And after undergoing several nutrigenomic tests and trying a few DNA repair skin creams, she concludes: No. Luckily for her, she didn’t have the shell out the $$$ herself to figure that out.
This is the key point of the entire article. Quoting Jose M. Ordovas, PhD, director of the Nutrition and Genomics Laboraty at the USDA HNRCA-Tufts University:
- Nutrients can’t fix gene defects
- We are a long way off from understanding how–or if–they actually can prevent disease.
Here are some of the companies and products mentioned:
DNA Tests at Beauty Spas
How was your last dentist visit? I’m guessing that a visit to a beauty day spa would be much more enjoyable. And guess what? DNA tests may be available at both places.
The Essence MedSpa in Medway, Massachusettes is offering “wellness profiling” by DNA.
Dr. Cela Doppelt, owner and gynecologist:
This is probably going to be the cutting edge for medicine in the future. It’s not just guesswork. We can say you are at risk for these conditions, you aren’t at risk for these conditions and this is what you can do to improve your health.
Interesting when a medical professional gets involved in the vending of direct-to-consumer nutrigenomic tests. Does that give the DNA tests more credibility?
MetroWest Daily News, December 4, 2006
Technorati Tags: nutrigenomics, nutrigenetics, nutritional genetics, genetics, genes, dna, diseases, illness, health, essence medspa
DNA Diets
Biljana Mihailovic has lost 18 pounds on the “DNA diet,” a diet developed for her after a nutritional genetic test. She learned that her “optimal foods” are spinach, broccoli, citrus fruits, and whole grains.
Wonder if anyone’s DNA test results determined their optimal foods to be fried chicken, cheesecake, and nachos?
Photo credit: obliquez
Technorati Tags: nutrigenomics, nutrigenetics, nutritional genetics, genetic testing, genes, dna, genetics, diet, dna diet
David Graham’s Personal Experience with Nutrigenetic Testing, Part 2
Last week, Toronto Star Life writer wrote about his check-up at Scienta Health. The results from his tests are back.
First and foremost, I apparently have two genes that promote longevity, interleukin 6 and 10. These genes are “over represented in males centurians,” according to Chin.
But here’s the deal. Despite the fact that I have these awesome genes, many of my lifestyle choices conspire to erode the possibility that I’ll actually live that long.
That’s the trouble, isn’t it? Simply being alive circumvents our genes’ full potential. A double-edged sword.
