Baffled by Numbers

Nidal Malik Hasan - and mammograms?

Talya Miron-Shatz, Ph.D. — Fri, 06 Nov 2009 21:36:36 +0000

I write on medical issues, never on shootings. But bear with me for one second, forget about the shooting and think of malignant diseases. These are detected through medical means, so as to be treated in early stages, thereby trying to prevent harsh consequences. A lot of money goes into screenings, such as mammography, at a huge cost. I can hear you say "cost is nothing compared with the benefits." But there is more to cost than money, as the following excerpt from Gerd Gigerenzer's book Reckoning with Risk illustrates:
"Eight out of every 1,000 women have breast cancer. Of these 8 women with breast cancer, 7
will have a positive mammogram. Of the remaining 992 women who don't have breast
cancer, some 70 will still have a positive mammogram." This means that out of every 1,000 women screened, 70 will be needlessly called back. They will live in fear for several days, if not weeks. They will undergo biopsies, and sometimes, even when the doctors will reassure them that it has all been in vain, they will be internally scarred. This, it appears, is a cost our society is willing to live with in order to save lives.
Now we can go back to the shooting. There have been some red flags, causing people in Nidal Malik Hasan's vicinity to think that something might be wrong. Presumably, his online postings equated suicide bombers to soldiers who throw themselves on a grenade to save the lives of their comrades. Law enforcement officials were aware of the suspicious blogging, but were unsure whether Hasan was behind them. No formal investigation was conducted.
And this is where the mammograms fit in. How come it is so common to screen many, at enormous financial and mental cost, to save the lives of so few? And how come this reasoning is not applied to terror threats? Why is it acceptable to subject women to screenings, but wrong to interrogate perhaps 1,000 terror suspects in order to detect 7? How come labeling an army officer as a potential suspect is inconceivable unless conclusive evidence presents itself, whereas labeling a woman as a potential breast cancer patient is done routinely, and considered to be done for her own good? As victims of the Ft. Hood shooting and their families would likely point out, when breast cancer is undetected, the patient dies. When terror intentions go undetected, a host of innocent people suffer.

How much should you eat? Woman vs. steak

Talya Miron-Shatz, Ph.D. — Mon, 05 Oct 2009 17:56:15 +0000

A week after Yom Kippur, I am reminded of my recent near-fast, an inadvertent one. It started at New York City's Broadway Diner on 57th street during an early dinner. Well, if you must know, it was 5pm and I ordered a steak. My dinner partner, being a gentleman, said nothing. Though his gaze seemed to be asking ‘really? Are you up to it?'. I gazed back ‘sure I am'!'
Turns out I wasn't. Famished as I was, when the plate arrived, I did not attack it. Rather, I gawked. The steak was the length of a crocodile, and I, having been to Florida's mangrove parks, have seen a crocodile or two. But the steak was not alone. To say it was accompanied by a vegetable would be a misnomer, even though onion is a vegetable. A football sized portion of onion strings, looking very much like yarn, and enough of it to knit a sweater for any NFL player, rested alongside it. Onion strings, in case you never came across them, are long files of onion, deep fried.
Did I mention I was hungry? Fifteen minutes of sawing away at the steak, and a few onion strings later, I did leave a dent in the 24 buck chuck, but more than half of it remained. Gentlemen have a limited capacity to hold their tongue. "She can't finish it," my early dinner partner told the waitress, "despite plenty advances on how hungry she is." Much as I wanted to prove him wrong, the steak had truly done me in. So much so, that I skipped proper dinner that night, had a yogurt for breakfast the following morning, and a small salad for lunch. It was not until dinner the next night, over 24 hours after the steak and I had our staring match, that I felt another pang of hunger.
So, I've discovered the perfect pre-fast dinner (here goes a Jewess that has had her share of fainting at the temple). But other than that, what are such blatantly oversized entrees good for? One could claim that people would know when enough is enough, except they don't, as Cornell University's Brian Wansink has repeatedly shown. If a soup bowl is secretly connected to a feeding tube, repeatedly filling it up, people will keep on eating. What's even more frightening if that they will not notice they are overeating. Our inter-tummy-satiation-detectors are not, it seems, overly efficient. In yet another experiment, amnesia patients received dinner. Then, an hour later, another one. And then, another. They could not remember eating, but only on the third dinner did they start turning down the food.
One could claim that you are free to eat as much, or as little, of anything you order, portion sizes being but a suggestion. Yet portion sizes mean more than the amount of food that lies before you. The size carries a signal as to how much you should consume. By over-generously portioning, restaurant owners are telling us that a behemoth sized steak and a mega-portion of onion strings are the right amount that should be consumed in one meal by one person. This leaves us feeling like losers when we cannot finish what we got (and paid for), while actually finishing mega-portions is where the real loss lies. Worse still, if food professionals indicate that a 24 pounder is the new 12 pounder, we are more inclined to serve over-sized portions at home too. Indeed, Wansink has found that portions significantly increased in size over the years. Is it a wonder that so have Americans? We can talk obesity epidemic till we're blue in the face, but until such behemoth portions come with a Surgeon General warning, the cows producing the steaks are doomed,

and so are we.

The Joy of Spandex

Talya Miron-Shatz, Ph.D. — Tue, 22 Sep 2009 20:51:46 +0000

I do power yoga and I'm proud of it. Those long, sweaty routines, with the instructors, forever serene (or mildly stoned, depends who you get), hammering in the significance of controlling your exhales. Yoga is the union on body, mind and breath, which we strive to achieve on and off the mat. Yada yada yada. Sure, I do that, and it gets me exhaling and toned, but last weekend I have seen the light.
It happened at a yoga equipment store on New York City's Upper West Side, which shall remain nameless but for the hint that it has a sour citrus in its name. The store is part of a chain and each branch gives at least one free yoga class a week en suite. This one offered a Saturday morning Zumba class with a hot, nay dashing instructor from the 92nd st. Y. I think his name was Roy, but I may be mistaken. In any event, Zumba, as advertised on the Zumba.com website, is a "fusion of Latin and International music that creates a dynamic, exciting, and effective fitness system." Their slogan is "ditch the exercise join the party". And what a party. We watched Roy (I think) in his blue bandana and matching blue eyes, as he swayed us on the store floor. The music, Latin and sensuous, rocked, and so did we. One two three, kick, one, kick, two kick. Sounds a little like aerobics? Maybe Jazzercise? Depends what year you matured in. Sure, it's the same old routine, but with a twist. Was it Roy, the good natured Upper West Side ladies, even the chunky one who danced like a queen, when Roy held her in his arms, the healthy breakfast that awaited (gratis!), or the combination of sexy music, good rhythm, and a few laughs with an instructor who looks like he just stepped off the sidewalks of Beverly Hills? All of the above, I think. Sure, it wasn't rigorous. We did more bouncing than I usually condone, and substantially less controlled breathing, oh but it was fun. So much so that I would love to come again, which is what it's all about, isn't it?
Because how many of us make New Year resolutions to go to the gym (and the New Hebrew Year is as good an excuse as any), but how may of us also persist?
A friend told me he was working with a personal trainer, but he was doing it at the gym. "The ladies can't stop looking," he bragged. "Are you wearing spandex?" I asked. "No," he replied. "But they are. And let me tell you, the ones who should not be wearing spandex are the ones most likely to do it." Much as he mocked the spandex wearers, he was regularly going to the gym, adding upper body strength and losing the gut, but also enjoying the female stares. If that's all it takes to keep a guy healthy and exercising, it cannot be bad.
A few laughs, some flirtation, fun, company. These make for a good life. Turns out, they also make for a good, persistent, workout.

How much should you weigh? (Part 2)

Talya Miron-Shatz, Ph.D. — Mon, 31 Aug 2009 19:18:47 +0000

The previous posting established that too many messages urge you to be incredibly, unhealthily thin. Is there anyone out there who does not want you to constantly deprive yourself of necessary calories? Does anyone actually think you should feel good with your body and have enough energy to conduct your activities? Does anyone believe you should not think you are fat, because, at a BMI of a mere 20.5 (18.5 is the lowest limit, beyond which one is morbidly underweight) you wear a size Medium, which means you cannot squeeze into Small and Extra Small?

Yes, apparently there is. Two of them actually. One of them is Alice. The other one is - or should be - you. Go Ask Alice http://www.goaskalice.columbia.edu/ is Columbia University's outstanding health website. I fell in love with Alice when I read the answer to a question a girl posed, who used to be bulimic and now wanted to maintain a healthy body weight. What would that be? She asked, and how do you get there? Alice (or whoever writes the answers) did not reply with charts, magic diets, or an ideal figure description. Rather, she told the young woman to add new foods gradually, and, more importantly, she told her to trust herself. The right weight, Alice said, was weight you could sustain over a long period of time, while eating enough to be healthy and not be constantly bothered with food. Now isn't this better than giving a gold standard weight, so you can fret if the weight that is naturally right for you happens to be a pound over it?

Over 800 women who participated in a study I did told me that they thought of their weight at least once each day. Satisfaction with one's weight was rare, to the degree that these dietary ruminations were associated with negative emotions. Some of these women were overweight, others weren't, but weight was one of the worst things to think about. Worst than financial security and second only to politics and current events. Thus, is an era of plenty, we come to idolize deprivation, and drive people away from living at peace with their bodies. These women would have been better off had they Asked Alice.

Photography of a lady of a lady from St. Tropez who may have skipped dinner, by Hammutal Shatz, courtesy of M.P.H.S. media

How much should you weigh? (Part 1)

Talya Miron-Shatz, Ph.D. — Thu, 20 Aug 2009 19:10:55 +0000

My 11 year will no longer wear just any cute t shirt. Rather, she is developing a somewhat preppy style, which is why we entered a ladies' garment shop specializing in striking black or white shirts with a stylish collar. Her being skinny and not yet a woman, I reached for the Extra Small ones, but when she emerged from the fitting room she said they were too tight. The Small she could breathe in, even if she needs a month or two to grow into them. Who wears the Extra Small ones, then, I wonder? And what has my daughter learned about her body when she discovered she could not fit into those? Is she too big? I want to say "no!", but I know I should say "depends who you ask."
Because too many people will give you the wrong answer. And too many things send out the wrong signals, such that tell us we need to starve. "You cannot be too rich or too thin." You've heard it before. So if you're thin, you should diet indefinitely. If you are fat - likewise. Just how much should you weigh and who should you trust with this decision?
Movies are no help either. Remember ‘The Devil Wears Prada', where the newby to fashion world, played by Ann Hathaway, gets ordained with a few indispensible tips. Hathaway reaches for the pasta and a co-worker shudders at her having carbs. "I'm a 6" Ann says, only to get the inevitable repost "6 in the new 14." Another co-worker who is mortifyingly thin, suggests her diet, which consists of fasting, and having a cube of cheese when you are about to faint. Hathaway's character never sets foot in the cafeteria, and becomes the slender bitchy figure so idolized by the magazine staff. Is that a good thing? Depends who you ask.
So who should you ask how much to weigh? To be continued.

Photograph of a lady from St. Tropez who skipped breakfast, by Hammutal Shatz, courtesy of M.P.H.S. media

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Better than Warren Buffet tips

Talya Miron-Shatz, Ph.D. — Fri, 07 Aug 2009 10:58:44 +0000

Investment tips are fun. You can swap them with friends, and hopefully make a couple grands. At a book store, you are likely to pick an investment tycoon's recent book, maybe learn a few tricks. Health risk information, on the other hand, is anything but cool. On the other hand, the stakes are a lot higher.
"Colon cancer will strike about 150,000 Americans" is alarming in and of itself. Now try combining it with the statement "The early warning signs of colon cancer: You feel great. You have a healthy appetite. You're only 50." If you happen to be 50 and healthy, you're probably sweating by now, certain you're going to get it. ‘It' being colon cancer, because it will strike so many Americans and you, for one, are displaying the early symptoms.
Should you be breaking a cold sweat? Writing a will? Asking more questions? And just what should those questions be?
The first step to tackling health messages such as the ones above, is to get at the bottom of the statistical information these messages convey. You need to ask: "150,000 out of how many?" True, 150,000 is a lot of people, but, keeping in mind that there are 300 million Americans, the ones diagnosed with colon cancer constitute a small proportion of .05%. In other words, 5 out of every 10,000 Americans will be struck by colon cancer. This is not exactly good news, especially not for those five, but it suddenly seems less devastating.
Three MDs, Steve Woloshin, Lisa Schwartz, and Gilbert Welch, recently published "Know your chances: understanding health statistics" http://www.ucpress.edu/books/pages/10893.php It's a book that helps you determine whether you should be writing that will. The authors show how to disintegrate the deceptively simple messages above to questions such as: does every American over 50 who feels great and has a healthy appetite have colon cancer? And what exactly is ‘struck'? Because developing colon cancer is not the same as dying from it.
And nothing is straightforward as it seems. An ad promising 42% reduction in deaths from heart attack will make most of us take the medication. Especially when looking at the picture of a loving mid-life couple. They're both smiling, and you just know he'll take the medication so as to have more good years with her. Obviously, the benefit is big, right? Because reducing a risk by 42% is cutting is almost in half. Except we do not know a half of what we are reducing. There is virtually no way of knowing what the base rate risk is. And we may ignore this fact, unless we educate ourselves in health statistics.
Like casino décor, health messages do not come out of nowhere. They have a clear and deliberate design. Every one of the opening messages is true: colon cancer will strike 150,000 Americans, .05% of Americans, and 5 out of every 10,000 Americans. Yet which one would you choose to use if, instead of an unsuspecting patient, you were a pharmaceutical company, an advertiser, or a lobbyist soliciting money for your organization? Reading the book helps you realize you cannot afford to be unsuspecting, not when your health is at stake. The only way to read through their agenda is by educating ourselves in the ins and outs of information presentation. A practice well worth the two hours it will take you to get through the book and achieve ‘healthy skepticism', which is what these good doctors prescribe. Probably not too bad to exercise when investing either. I am sure Mr. Buffet would approve.

How Juliette Binoche Nursed the English Patient – Power of Love

Talya Miron-Shatz, Ph.D. — Tue, 14 Jul 2009 04:37:04 +0000

Writing from the heart elicits responses from the heart, and here is one particularly moving response to my recent posting.

"From my personal experience (I have a history of Hodgkin's) the reference point is the key to healing. It not only heals the heart, it actually gives the power to heal the cause.

The doctor, who guided me through one of the most difficult years of my life, when I met her at the emergency unit (more than 20 years ago) held my hand, hugged me, smiled and said "we are going to get through this together". She wouldn't let me sink into despair - she demanded (yes, demanded) that I continue with my studies (I didn't allow myself to skip studies the day after treatment...not even once), bring reading assignments with me to every (awful) chemo treatment. She is my savior angel- she knows my name to this date, even though it has been over 20 years since we first met... She was just a slightly older then I was when she met me all those years ago. Her personal and caring attitude made me decide that I can do it.
You touched the trigger for self-powered healing."

While the person, the woman, wife, daughter, friend and mother in me embraces that, the researcher in me seeks the scientific evidence so that no one will dismiss emotional patient support as mush. Well, guess what, the scientific evidence is there.

In ‘A General Theory of Love' three psychiatrists, no less, Lewis, Amini and Lannon, elaborate on the limbic brain, the part of us that is neither primitive and automatic, nor sophisticated and, for want of a better word, cerebral. The limbic system with its chemicals - serotonin, opiates and oxytocin is in charge of bonding, but its effects extend far beyond the mother-child connection. This is not about dissecting animals or pointing to brain parts. As the authors put it "The brain's ancient emotional architecture is not a bothersome animal encumbrance. Instead, it is nothing less than the key to our lives. We live immersed in unseen forces and silent messages that shape our destinies. As individuals and as a culture, our chance for happiness depends on our ability to decipher a hidden world that revolves-invisibly, improbably, inexorably-around love." Because if love is engrained in our brains, if we are programmed to seek it, then why should we puzzle that we do not respond well to messages that ignore this emotion or are devoid of it? Why should we have faith in pharmacy-packaged opiates, and neglect the immense power of the opiates our own brain is capable of generating? Call it the power of love.

Most likely, what happened to the Hodgkin's patient who was kind enough to share her experience above, and what happened to Becky (see previous posting ‘Holding Becky's Hand') occurred at a limbic emotional level rather than at the neocortical rational level. What if the doctor had not hugged her? What if she had coldly cited statistics on recovery rates, and suggested a course of treatment, leaving the patient emotionally alone? No one can take away the physical pain, the distress, the panic. But empathy and trust are critical part of healing, and loneliness is an ailment that needs not to be added to malady. Our numerical, cerebral, rational culture forgets the major place of emotion in our human makeup.

Dr. Mayer Brezis of the Hebrew University alerted me to A General Theory of Love. He and his colleagues will be teaching a new course on the humanistic aspect of medicine. Hopefully others will follow.

Holding Becky's Hand

Talya Miron-Shatz, Ph.D. — Tue, 07 Jul 2009 03:16:39 +0000

Becky was wounded in a vicious accident, almost 4 months ago. In fact, she hates the term ‘accident' as it implies this may have been her fault. It wasn't. A rocket hit Becky's car on way home from work. She suffered injury to her stomach and thigh, which almost cost her life. She is better now, way better, but the physical pain is still there, as are the gap between what she used to be, and who she is now. She is fighting still. Struggling with staircases, long walks, physiotherapy and bad memories. And with the fear of the unknown which lies ahead - the gnawing suspicion that she may never be well. As strong willed as they come, and just as independent, Becky is not one for sugar coating. Her words, I think, speak for themselves:

"I had several good days - with myself, but also with doctors. Some of them really like me. It is wonderful and unexpected when a plastic surgeon takes my hand, holds it and says - Becky, you are wonderful and you are doing great and don't worry - everything's going to be just fine."
The surgeon's gesture provided Becky with multiple kinds of ammunition to help her fight the good battle. He acknowledged her as a person who has a name and a personality, and he also projected a future for her, one she could live with.

Decision scientists would say the surgeon provided Becky with a reference point, against which she could now assess her progress. As Kahneman and Tversky's ground breaking, Noble Prize winning work demonstrated, people assess the value of, well, anything, against a reference point. No value exists in thin air. Thus, a stale biscuit may seem revolting when compared with a luscious cake, yet tempting when measured against the prospect of starving. So when Becky measured her tattered, recovering self against who she used to be, she seemed to be doing poorly. And she cannot help but gauge how much she has lost. But when the surgeon measured Becky, he did this against the backdrop of other patients he has seen over the years, moving on a trajectory from a mess of blood and bone, to fully functioning individuals, practically as good as new. Thanks to him, Becky can now assess what she stands to gain. She can now place herself on such a trajectory, knowing that, even though it may not feel like it, she is doing well, even better than predicted, and that this is all part of recovery. It will be over, some day.

Becky - I did not tell them your real name, but I kept your words. Hang in there, I love you.

Genetic testing and the field of dreams (part 2)

Talya Miron-Shatz, Ph.D. — Thu, 18 Jun 2009 14:30:27 +0000

The first Annual Consumer Genetics Show in Boston last week, reminded me of the First Automobile Show, New York City's Madison Square Garden, November 1900. ‘The Grandmother of all Auto Shows' presented vehicles to a world with no highways or navigation tools. A world with barely any road signs, because people rarely wandered outside of their well known realm. The show organizers built a ramp for cars to climb so as to demonstrate that cars can go uphill, even if no horse powers them. You could call the car manufacturers who presented there dreamers, but such dreamers, fueled by ambition, adventure, a flare for novel ideas and, let's face it, the desire to make a buck, are what pushes the world forward. The world was not ready for those vehicles, and yet, a century later, automobiles prevail, as do highways, roadmaps, and posh British accent GPS devices.

Is our world ready for direct to consumer genetic testing?

My previous posting suggested that consumers may not be properly equipped to know what they are bargaining for. Especially when they seek certainty and clear cut answers, and receive probabilistic risk assessments, which may or may not involve behavioral recommendations.

In past years, the consumer would never be the one to instigate these inquiries. It was the health professional's responsibility to alert you of dangers and to test for various conditions. Consumers, savvy as they might be, cannot navigate through testing results without professional assistance. And even when such assistance is available from testing companies, one needs a physician to order additional testing, to prescribe medication, and to follow-up over the years.

Yet such medical surveillance from one's primary care physician, or even from specialists, paid through one's health insurance, is not necessarily available. .

One of the impediments is legal, even though the genetic safety law, slightly over one year old now, works to ensure that none will be discriminated based upon genetic information. After 13 years of congressional debate, President George W. Bush signed the Genetic Information Nondiscrimination Act (GINA) on May 21st, 2008. The law was initiated by a great concern that insurance companies will demand genetic knowledge, and that employers might wish to base hiring and promotion decisions on such information. The bill had passed the Senate unanimously and the House by a vote of 414 to 1, and guarantees that no American will be thus discriminated by insurers or employers. Lawyers do not know of lawsuits that have been filed so far, yet as long as medical insurance companies can decline to accept you based on preexisting conditions, it may not be wise to disclose to one's doctor anything remotely incriminating, which would go on record.

And this is not the only problem about incorporating physicians in the process of sorting out and acting upon genetic screening results their patients went out and bought. Granted, physicians have long known that genes determine or influence conditions, but, for the most part, this knowledge was partial and seldom had to be acted upon. The technological ability to scan for thousands of genes does not mean all physicians have updated their knowledge. To illustrate, one of the scientists at the conference had presented her genetic mapping and inquired her doctor whether she was homozygote (that is, carrying two identical genes) or heterozygote (carrying two different genes) for a condition. He stared at her blankly and said "let me get back to you on that one."

Determining whether direct to consumer genetic tests are good or bad for you is more complex than it may seem. And it may very well be time dependent. What now seems strange anecdotal, or, to put it more favorably, partially beneficial, may be common practice in the future, when analyses have been made aggregating genetic, behavioral and environmental factors to present a complete picture of risk and its prevention. Sometime in the future consumers will be fully aware of what genetic testing entails, and their doctors will be fully equipped with the knowledge allowing them to integrate testing into scientifically sound practices. Companies, by the way, know this. My talk on research I've been doing regarding breast cancer screening was met with general acceptance, even though I showed that people often misunderstand risk probabilities, and have unrealistic expectations of tests.

Moving forward in time from the Automobile Show, consider the Kevin Costner movie Field of Dreams. He builds the field, and, sure enough, they come, ‘they' being the ghosts of baseball players past. Direct to consumer genetic testing companies are currently building the field, not for ghosts, but for the future. Sure enough, sometime in the future, their consumers, and the entire medical field, will follow.

Genetic testing and the field of dreams (part 1)

Talya Miron-Shatz, Ph.D. — Mon, 15 Jun 2009 04:02:40 +0000

Genetic testing is currently available for more conditions than ever and with greater precision.
Testing is so widespread, even affordable, that it has become a commodity with companies offering kits for gathering saliva, which are then mailed back, analyzed, and followed up with genetic reports. The technological ability to pore over one's genes dovetails with a zeitgeist promoting choice, knowledge, and patient autonomy. And what better proof to the marriage of zeitgeist and science than the name "The First Annual Consumer Genetics Show" which took place in Boston last week.
Understanding the genetic foundation of diseases is key not only to treatment but also to prevention. Such information is beneficial on a personal level, sometimes allowing people to counteract risk factors, or at least to prepare for what awaits them. Greater benefit still comes at an aggregate level, when more and more information is gathered about the interaction of genetics, behavior and environmental factors, and how these affect disease.

Yet it is doubtful that curious clients are aware of the emotional and potential judicial issues that may arise once they have relinquished their body fluids. Or that their physicians know how to interpret the new knowledge, let alone how to act upon it.

While ‘consumers' is a neutral word, granting one choice and material power, ‘patient' takes us to another domain. And, seeing as what lurks within our genes is often cause for worry, some consumers of genetic testing will be purchasing the knowledge that they are at greater risk than others to become patients. This may be good, in the case of conditions where one can be proactive in preventing disease onset, or improving prognosis. But what happens when this is not the case? Dr. Robert Green of Boston University, currently a Harvard Fellow of Genetics, related a study which did a follow up on people who were diagnosed as having the ApoE-ε4 gene associated with Alzheimer's disease. Alzheimer's, he said, offered a unique model for exploring clinical utility, as the analytic validity of the gene detection was excellent, and the clinical validity was well documented. On the downside for patients were the fact that no treatment could be offered, though this meant that pharmaceutical companies had no vested interest in promoting diagnosis. Despite the fact that no cure was in view, people wanted to know their risk. Most, though not all of the people who said they would participate in the study actually showed up. Initially, those who learned they had the risk factor gene were more distressed than others, but the effect wore off with time. This is also predicted by psychological theories of adaptation. Two things which future consumers of testing should note were that patients who had the ApoE-ε4 gene and who had the opportunity to speak with a counselor about the implications were less distressed than people who only got a brochure.

This suggests that when shopping for testing, one needs to find out not only the price and the range of mapping, but also what kind of support they would get once they hear the results. Dealing with genetic testing results demands more than cognitive skills. Adrian Edwards of Wales's Cardiff University recently reviewed studies on communication and decision aids in traditional oncological genetics. Edwards and his colleagues found that users gained improved understanding, knowledge, and risk perception from various interventions without adverse effects on anxiety, worry and depression. However, it was often the supportive or emotional elements of the counseling that provided benefits to users, rather than the informational or educational elements. Therefore, the availability of such support becomes an important issue for the consumer.

Do patients, I mean consumers, know they need to inquire on the quality of support? As Dr. Peter Ubel suggests in Free Market Madness, http://www.peterubel.com/free-market-madness/ people do not always act upon their best interests. And this might be one of these cases. As companies vary wildly in the degree of pre and post-diagnosis interpretation and emotional assistance they propose.
Another thing to be noted by future consumers, is thatpatients who were diagnosed as having the ApoE-ε4 gene were more likely to consume nutritional supplements several weeks after being diagnosed. While supplements are relatively cheap and harmless, this attests to the difficulty of being helpless when facing a terrifying disease prospect, and helplessness is perhaps exacerbated in individuals who are proactive to begin with.

Kenneth Kornman of Interlukin genetics spoke of the challenge companies face - how to responsibly deliver. This involves setting realistic expectations - clarifying that tests provide predictive risk assessment, but are not diagnostic, and acknowledge that we never have perfect information about the risk for future disease, and that while genetics are one well-defined component of disease, diseases are characterized by a combination of genes and risk factors. The same gene variant can be associated with either high or low ‘good' cholesterol levels, depending on the person's level of dietary fat.

Yet my studies show that people do not always understand probabilistic risk assessment, and that they sometimes expect more from genetic tests than the tests can deliver. For example, my colleagues and I asked women how important it was for them that screening for a gene associated with breast cancer would tell them with certainty whether they will develop breast cancer. Half the women answered "the test cannot do that", and they were right, because the test only offers a probability, not certainty. But a third of the women assigned great importance to this feature, which the test does not have.

So are direct to consumer genetics good or bad for you? And how does it relate to the Field of Dreams? More in the next posting.