By Ronni Sandroff | Sept. 2012 | The Hastings Center Report
In this issue of the Report, Eric Juengst, Michael Flatt, and Richard Settersten, Jr., explore the positioning of genomic research as a “paradigm changer.” This notion has given the field a certain cache quite aside from its actual contributions to improved medical care. Genomic research is described to funders, health care leaders, and the public in language that includes a vision of the future. It will move us beyond the inadequacies of current medical care into a bold new world of personalized, predictive, preventive, and participatory medicine.
The analysis of Juengst and colleagues focuses usefully on the fourth “p,” taking a hard look at the equation of participatory medicine with “patient empowerment.” The authors note that patient empowerment makes a virtue of clinical necessity because prevention depends heavily on each patient’s lifestyle and behavior.
Patient empowerment is a noble ideal, but the authors point out that it can be a double-edged sword. Indeed, some advances in pharmacogenetics may leave patients less empowered-for example; your health insurance may decide not to pay for a drug or therapy because it has been shown to work infrequently in people of your genetic makeup. And the authors caution that genetic factors are just one part of what makes an individual respond-or not-to a particular treatment, noting especially the role of cultural expectations. The availability of pharmacogenomic information might end up limiting rather than expanding a patient’s power to influence medical care choices.
Other possible downsides to patient empowerment occur when profiling reveals an individual’s genetic susceptibility to various diseases. The authors discuss the risks of shifting the responsibility for health care onto the shoulders of the patient and stigmatizing people who do not, or cannot, make the “right” health choices. For, indeed, the biggest challenge in preventive medicine today is motivating people to do the simple but onerous things that we know work: eating less fat and lower calorie diets, exercising, and reducing stress. Does knowing more detail about your personal risks help motivate some people? Which types of people? This is a question that needs more serious study.
Genetic profile tests are sold online directly to consumers, some with subscriptions that update a person’s profile as new knowledge emerges. In a recent groundbreaking move, 23andMe, one of the more prominent testing companies, announced on July 30, 2012, that it had delivered its first round of 51O(k) documentation to the Food and Drug Administration seeking approval for twelve predictive tests. The company’s Web site says it now has 150,000 people genetically profiled in its database. These numbers will likely grow if the FDA approves genetic profile test kits and they become available to consumers in retail stores. If the tests are scientifically validated, the agency seems inclined to support access to health tests for consumers without the need for a prescription from a medical professional. For example, it approved the retail sale of the first rapid home test for HIV on July 3,2012.
Whether or not patients are actually empowered to take beneficial actions because of insights gained from genetic testing remains to be seen. But the power of consumer participation in health research is a new and growing factor, thanks to the connective power and convenience of the Internet. Juengst et al. mention how genomic researchers frequently discuss a “genetic citizenry” of early adopters who may actually help construct and advance technology by volunteering-and perhaps paying-for their own testing. If participatory Web sites like PatientslikeMe and CureTogether gain more numerical clout, crowdsourced medical research and rating of treatments become possible.
And health information is already being crowdsourced at Wikipedia, where more people read medical articles than at most other Web sites. For example, on the day I checked, the Wikipedia article on genetic testing had been viewed 39,190 times over the previous ninety days, while the article on diabetes mellitus had been viewed 663,279 times during the same period.
Like those in many other fields today, medical and health professionals are challenged to redefine their expertise and prerogatives in a way that can usefully coexist with the growing number of citizen scientists and participants who want to make their experiences count, contribute to a knowledge base, and help others. As Juengst and colleagues point out, this has the potential to disrupt the therapeutic relationship between patients and physicians. But it also has the potential to catapult us ahead in scientific knowledge. That makes it something that professionals should be wondering how to enhance and encourage, rather than fear.
Ronni Sandroff is editorial director, Health, and Family, at Consumer Reports
By Ronni Sandroff | Jan. 2012 | Next Avenue
Yes, I’m still working. By choice? Partly. By necessity? Partly. To show off? Uh, maybe mostly.
This latter motivation has been fanned of late by the attitude of my age mates, and even those 10 years younger, who complain that my job is interfering with their social routines. Sorry, but no, I can’t join you for daytime classes at the Y, a Wednesday matinee or discount lunch at Bouley during restaurant week. And I certainly can’t drop everything to grab that cheap airfare to Ecuador.
It feels odd to have to defend doing honest labor to those who seem to take pride in being at loose ends. Either it’s a smug email like: “Ho ho ho, it’s really warm in Florida today, and I see it’s snowing up your way, poor dear.” Or patronizing: “I remember working. Such a drain on your energy.” Or “Wow, you look corporate in that outfit. Is that the new work uniform?” (Sorry, I didn’t have time to change into my jeans before meeting you for dinner). They seem to resent the sense of self-importance that comes with having deadlines, meetings, stretch assignments and the wardrobe to handle them in. Does the only fun they’re having in retirement involve wearing sweat pants and scoffing at me and others who go to the office every day?
It reminds me of my experiences as a working mother in the 1980s, when the stay-home moms treated me with a similar mix of hostility and competition. I resented them right back for thinking they had a monopoly on doing motherhood right. Until that is, I made local friends on both sides of the divide and found we had a lot to offer each other — not the least of which was a different perspective.
The bright side of being teased for still working is that it’s made me think hard about the view from each side of the fence. Here’s my short list of things both retired and working people need in their lives.
Less time to fret. An advantage of spending 40-odd hours knuckling down in the office is that I don’t have endless time to think about my troubles, my possible future troubles, or what I should’ve or could’ve done about the troubles of yesteryear. And I don’t have much time to listen to other people’s tales of major and minor pains, ungrateful children and miscellaneous inconveniences and outrages. Is it just me, or do others dread these heart-to-hearts? At work, we tend to chat each other up about the latest gadget, movie or political scandal. It’s not that working people don’t have minor and major aches and pains. We just don’t mention them so much. Retired or not, we all need major distractions from ourselves and conversation that at least sometimes rises above the minutiae of our daily lives.
Bragging rights. One of the great benefits of working, I find, is the nod of respect I get when I tell people what I do. I’ve watched a number of friends bravely retire precious identities as Expert Pooh Bah or Owner-in-Chief, only to find their self-esteem collapsing when someone asks them what they do for a living. “Mostly errands,” might be their answer. Or a really long tale about what they used to do and how they wouldn’t mind doing a little bit of it now, either, if you happened to know of anyone who needs a professional who hasn’t worked in five years. My conclusion is that working or not everyone needs to write themselves a new “elevator line” every so often — a two-sentence upbeat response to the inevitable question: “What’s new and interesting with you?”
Time with family and friends. Here’s where my mixed feelings about retirement come into play. Yes, I would like to emulate a friend who takes her granddaughter to toddler art class twice a week, or the one who never has to jump off the phone with his elderly parents, saying, “I’m late for a meeting.” Many of my retired friends seem to get this right, so I’ve taken inspiration from them. In recent years I’ve been booking my evenings and weekends less tightly so I can more often say yes to spontaneous visits or last-minute requests for help from family and friends.
Energy for growth. My retired friends really soar when they’re learning something new. They get engrossed for days decoding the latest electronic device or return revved up from classes in ballroom dancing, oil painting or infant CPR. And when they’re in that mode, any residual jealousy about my job vanishes in the delight with their own lives. Inspired by this, I took my first class this fall — an eight-week online university course (paid for by my company, thank you very much) — and was quite amazed at how exhilarating, and difficult, it was. “To make the best use of free time, one needs to devote as much ingenuity and attention to it as one would to one’s job,” according to psychologist Mihaly Csikszentmiha, author of “Flow: The Psychology of Optimal Experience.” This makes me feel that retirement, and the need to create the best use of all my time, might be challenging enough to suit me when I let go of my job. Some day.Retired or not, we need to remember that many of us are still on a life journey to become more interested and interesting. So perhaps we can make a deal. If you promise not to be smug because you’re retired, I’ll try not to be smug about still working.
By Ronni Sandroff | Feb. 2012 | Next Avenue
Turning lemons into lemonade? Here’s an actual recipe
Are we doomed yet? This is kind of a daunting year. The omens are bad, according to the ancient Mayans, as interpreted by contemporary prophets of calamity. Even good ole Chevrolet dramatized the apocalypse, complete with frogs falling from the sky, in its 2012 Super Bowl
commercial.The evening news only reinforces the general sense of foreboding. The Euro is collapsing. War with Iran is looming. The U.S., real estate market, is in a quagmire. “And it’s going to get worse,” you can count on a pundit to intone.
Suddenly, pessimism is cool. So what does a gal who thrives on positivism and a go-go economy do now? I’ve had to give it a lot of thought because my usual ways of coping seem a bit dated. Remember when being perky was in? I was good at that. I have a gift for spotting the silver linings in the storm clouds, but lately, I’ve found that pointing them out makes people act like I’m deluded.
Some seem to thrive on the new negativism. “Frustration, anger, sadness, and loneliness. That’s, to me, inspiration for lyrics,“ the pop star Pink said in an
interview. “Happiness? Useless. If I’m happy I don’t get out of bed — there’s no point.”
Pink is not my role model in any case (and why isn’t her name Blue?), but she seems to embrace a flawed coping technique — namely, to convince yourself that you prefer negative scenarios and outcomes. The flaw is this: If you believe that you thrive on negativity, you will breed more of it.I agree with Charlotte Bronte, who said that cheerfulness “is a matter which depends fully as much on the state of things within, as on the state of things without and around us.” Yes, if the state within is positive, I have more energy and power to put toward fixing the bad situations I too often find myself in.
The big question is, how do you stay upbeat in a year when it’s hip to be a cynical and defeated? To cheer up the world, I’ve devised a step-by-step recipe for turning this lemon of a year into a refreshing and inspiring gulp of optimism. Call it lemonade, circa 2012.
Step 1: Count your lemons. Count ’em up quick. Don’t worry about leaving any out. Then say: “Ah, I certainly have a bumper of crop of lemons. I can relax now; I’ve already counted them.”(More: Why Today Is Better Than the Past)
Step 2: Squeeze. Sour as they taste, lemons contain a lot of nutrients. So, too, do those fabulous moments of life — they offer great opportunities for learning and growth, along with some purely pleasurable experiences. Put those in your juicer too, and squeeze the most joy out of every wonderful non-apocalyptic moment of this wobbly year.
Step 3: Add sugar and water. Be extravagant with the sugar. This kind has no calories and comes in the form of smiles, small words of encouragement and the odd joke. To dilute the power of the lemons, add a generous splash of that ordinary miracle, fresh water.
Step 4: Keep stirring. Praise yourself for stirring up some optimism. Go on, no one will know. And share the wealth: Offer a little lemonade to whoever’s around. Salud!
