To know or not to know

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To Know or Not to Know

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How They Treat People In The Service Industry Some people like to shoot down restaurants as being a cliche first date, but I pretty much insist on going out to eat the first time I meet someone. The way you interpret a girl's body language will vary depending on the context. Clouds in the way, transparency was off, bla bla bla. If she's always there for you when you need her, she might like you.

She was 44 years old. The dead scream louder than the living in the echo chamber of the id. Later on, it's fun to see how accurate my observation was.

To Know or Not to Know

Paula Wishart, a counselor from Ann Arbor, Michigan, learned in her 40s a sinister family secret: Lynch syndrome runs through their genes. Lynch syndrome is caused by a collection of genetic mutations that vastly predispose a person to an early and aggressive form of colon cancer. In women it's linked, too, with uterine or endometrial cancer. The mutations were discovered in the early 1990s. That was too late for a whole string of Wishart's ancestors—including her great-grandfather and her grandfather. Shortly thereafter, her daughter—Wishart's beloved first cousin—succumbed to cancer in her 40s. Genetic screening for a potentially fatal illness is so fraught and frightening that most candidates for such a disease don't get tested. Wishart, too, had been scared to know. But she was more scared not to know. When her mother's tissue sample tested positive for Lynch syndrome, she and her four siblings were tested. Her three older siblings came out clear. Wishart and her twin brother weren't so lucky. She had a mutation in one of the Lynch genes. Initially, the recommended course was that she just keep close watch, via regular internal exams with a scope. Then one of those exams revealed a small polyp. Within a year, it had swelled into a growth that completely encircled a portion of her colon. This wasn't cancer—but cancer is certainly what it would become, doctors insisted, unless decisive measures were taken. That meant radical preventative measures to remove not only the growth but places cancer might appear in the future. And potentially her ovaries. Now the full calculus of life and death and risk and pain and prevention came into play. Her cancer-stricken cousin had left small children behind. Paula could not bear to think of her own kids growing up without a mother. She dutifully reported for the full program of excisions. She was 44 years old. Not long ago, fatal vulnerabilities were known—so it was said—only to the gods. Then doctors replaced gods and that information passed into their hands for safekeeping. Now the so-called genomics revolution has changed the game again. It has passed that information on to us. This has complicated matters, for better and worse. Genetic tests vary wildly in their predictive value— from absolutely definitive to so speculative as to be worth not much more than a horoscope. This latter is the realm of direct-to- outfits that cater mostly to healthy, curious tire-kickers—with no known hereditary risk of serious disease. Fatal diseases are very rarely linked to a single gene—usually they are the product of an interplay of genes beyond the current of scientists. So discovering you have a glitch in a snippet of DNA thought to be linked to a disease may be quite significant or not very significant at all. Usually, when someone's a candidate for a heritable disease, at least one piece of the puzzle—a reliable test or an effective treatment—is missing. And so the era of widely available genetic testing has created a kind of laboratory for studying uncertainty: How well do we handle it? How clearly can we see our way through it? Gary Reiswig, a 71-year-old retired innkeeper and writer from East Hampton, New York, has thought longer than most about what constitutes toxic knowledge. Reiswig's family carries a rare and devastating gene mutation known as PS2 that causes early-onset Alzheimer's. He documented his family's travails in his memoir, The Thousand Mile Stare. But he ran between the raindrops: He is PS2-free. What Reiswig did inherit was the ApoE4 gene mutation, which has been linked to Alzheimer's of the more common, later-onset variety. The two gene mutations—PS2 and ApoE4—are potentially quite different in their psychological blowback. PS2 is a relatively imminent death sentence. ApoE4 bequeaths a slightly elevated probability of eventually developing a disease you can't do much about anyway. Reiswig was tortured by the possibility he might have PS2. But ApoE4 is so much less vivid a threat that he wouldn't even have bothered to be tested for it were he not already being screened for PS2. You could say that Reiswig's PS2 score was toxic knowledge to him, and his ApoE4 score isn't. Toxic knowledge is knowledge that because it's not definitive or not actionable or both, is simply not worth knowing. It poisons relationships and emotional well-being. When the odds of getting useful data fall below some subjective threshold—when the grain of salt the test results come with becomes too large—genetic counselors will usually advise against testing. But individuals respond differently to threatening information. One person's fixation can be another's catalyst to growth. The Truth Shall Set You Free Bonnie Beaver, a Minnesota-based office manager, has a family history of breast and ovarian cancer. In the early 1990s, two gene mutations—BRCA1 and BRCA2—were found that link tightly with the two diseases. So when Bonnie was diagnosed five years ago with a breast tumor, she opted to peer into her genome. She was 35 years old. Beaver had opted for the genetic test to help her decide whether to get a lumpectomy to attack what already was, or a full mastectomy to prevent what might be. Was she afflicted with the mutation or not? Getting the test would quell some of that ambiguity. Not all, for the mutation does not condemn one to cancer, even when there's a strong family history. Following through on the mastectomy would further resolve matters. After a more complicated cost-benefit analysis than Bonnie's she was only 24 , she opted for a double mastectomy. It's hard to overstate the human for certainty. Our pattern-making brains have a search-and-destroy relationship with ambiguity. In such circumstances we're intensely motivated to resolve the not-knowing, come what may. Most people prefer bad news to no news. A recent Harvard medical school study confirms just how corrosive waiting in limbo really is. A total of 214 women awaiting three kinds of medical procedures were asked to report their levels. The most anxious were women awaiting the results of breast biopsies to determine whether they in fact had cancer. This group's stress was markedly higher even than a group of women who had already been diagnosed with liver cancer and were awaiting treatment. We raise our consciousness and lower our standards. We find our bootstraps and tug. But we can't come to terms with circumstances whose terms we don't yet know. An uncertain future leaves us stranded in an unhappy present with nothing to do but wait. Paula Wishart now thinks her decision to get tested was a way of imposing order on chaos. We can do something about it. This relatively new branch of psychology concerns itself with how we brace against awful potential outcomes. One phenomenon, routinely observed by psychologists, is that in the face of a death scare we grow more conservative. Suspended in that limbo of scary uncertainty, we seek the security of the familiar, and double down on our existing beliefs. And when people are really frightened, they miscalculate the odds of the worst occurring. These days some astute doctors and genetic counselors have almost as many books in their offices on probability as they have books on medicine. Sound thinking requires calibrating one's certainty to the level of the evidence—but that is a rare skill and one that, it turns out, eludes a lot of conventionally smart people. Where risks are concerned, thinking errors abound. The dead scream louder than the living in the echo chamber of the id. In one recent Swedish study, 120 men with prostate cancer in the family were asked what they thought their risk of getting the disease was. It's the emotional freight of the C-word that knocks sound judgment out, making us overestimate the chance of it happening to us. Genetic counselors, in particular, help patients clear the fog of biases. Paula Wishart believes her counselor helped flip the switch. She was leaning toward doing nothing: no tests, no surgery, leave the outcome to fate. But there are some cases where ignorance is bliss. Huntington's disease is an inherited, incurable neurological affliction that strikes its victims between age 30 and 50, progressively robbing them of muscle and function until it kills them. The responsible gene is identifiable and 100 percent fatal, and you either have it or you don't. And that's exactly the choice most Huntington's candidates make. Approximately half of this group says they're interested in theory in knowing. But only about 15 percent go through with the test. For most people a Huntington's diagnosis is toxic knowledge—a piece of news that clouds rather than clarifies. Ignorance, in this case, is a kind of manufactured certainty. Knowledge of the disease, on the other hand, shades every day on earth thereafter with new problems and impossible decisions, and absolutely nothing can be done about the underlying condition. Both Harvard psychologist Steven Pinker and DNA dicoverer James Watson, for example, have said that if the mutation ran in their families, they wouldn't want to know whether they had it. So why would anyone want to know? What explains that other 15 percent? And how, for that matter, do we determine when knowledge becomes a burden— when it is toxic—or when it is a positive thing, spurring change and constructive behavior? It turns out that tolerance for ambiguity is quite a personal thing. Certain types seem to tolerate it better than others. Patients can be shocked into paralysis or, conversely, shocked into action. Genetic counselors must go on to assess whether their client is ready or willing to get tested. But there have been attempts at a more rigorous metric to determine who can handle the full facts. In the spring of 2003, the personality psychologist Lew Goldberg slipped a provocative question onto a questionnaire he gave to Oregon residents: If there existed right now a genetic test that would tell you, with accuracy, when you were going to die, would you want to take it? Goldberg is a father of the Big Five theory of personality traits—the idea that there are five core dimensions to the human personality. And so he was naturally interested in which personality types would prefer to have such medical certainty in their life. Goldberg found that most people don't want to know their expiration date even if they could. Only a third of his subjects were open to that knowledge. Who were these people? Two personality dimensions that came into play were and openness to experience—a measure of curiosity and hunger for novelty. Another personality trait—, linked to a general satisfaction with life—correlated strongly with wanting to know, but maybe not in the way you'd expect. Happy people didn't want to know; grumpy, unsatisfied ones did. Combining Goldberg's research with other data on personality, it appears that young, slightly prickly and restive intellectual folks tend to say: Gimme the news, Doc, and the sooner the better. NOT ANONYMOUS: Gary Reiswig recognized his family in the pages of a scientific article about a rare disorder. After his father died in 1965, when Reiswig was just 25, it became clear that a kind of curse ran through the family: the lethal genetic mutation we now call PS2. At the time there was no individual genetic testing for PS2. Reiswig participated in medical research to help determine the cause of his father's death, but he couldn't know if he had it, even if he wanted to. He would have to wait three decades for definitive news. When the word finally did come, it came by accident, the day he read a scientific article lent to him by a friend, and recognized himself in the lineage of a family extensively afflicted by the gene mutation PS2. He didn't have the mutation. He was 55 years old. During that time in psychological limbo, Reiswig cooked up a kind of thought experiment to deal with the data void. His gambit—and like much defensive , it may not even have been entirely voluntary—was to pretend he had tested positive. Early on, he realized that there is one way to gain some control over a death sentence: You can still decide when. Then the boom swung 180. Instead of trying to stop life, he would gorge on it, in whatever time he had left. Contradictory thoughts duked it out involving care of the body, care of the mind. Explore macrobiotic diets competed with pleasure-principle thoughts of the eat-dessert-first variety. Remember, knowledge is the only thing of value, he reasoned. So pursue that Ph. But at the same time: is a waste. Reiswig decided, in the end, that neither life nor education nor anything else, really, was a waste. The clock was whirring. Having already quit the ministry his first job , he plowed ahead on a Ph. He quit a high-level job in the City of Pittsburgh planning department and he and his wife moved to East Hampton to run the venerable old inn they had purchased. Very bad news, so long as it's definitive, is useful in that it helps you plan. In the 2003 film My Life Without Me, a young mother of two young children, played by Sarah Polley, learns she has inoperable cancer. She goes to feverish, quiet work recording tapes for her children, and sealing each in an envelope to be opened on their birthday, year by year, 18 years into a future she will never live to see. Genetic counselors often see the same soberly heartbreaking planning at play in their Huntington's patients. Liz Kearney remembers one young man she worked with, whose career options lay before him. But he was also thinking, 'If I'm going to develop Huntington's, I don't want to spend the next 10 years doing med school and then a residency. Because by the time I got out of school I'd be starting to watch for symptoms. I'd be limited in terms of how long I'd be able to practice. Whether I have the gene or I don't will determine my path. He decided not to go to med school and he opened a sporting goods shop. You can't treat Huntington's, so having that knowledge didn't make a difference in terms of his medical treatment. But in terms of his life decisions, it was critical. There may be no cure now, but you are in a position to help get one found. A few years ago, Google's Sergey Brin took a genomic test that revealed a vulnerability to Parkinson's—another of those devastating, progressive diseases for which there is as yet no treatment. Brin has since pumped millions into research. Similarly, one reason Alzheimer's research has been a bust is that drug treatments have been tested on symptomatic patients—and once the plaques have developed, it's now thought, it's too late for a cure. Real progress may yet depend on subjects who are as yet nonsymptomatic—because drug treatment may yet be effective for them. RIPPLE EFFECT: Bonnie Beaver's discovery that she has BRCA-1 prompted her young niece to be tested. At some point in her decision process to be tested for the breast-cancer gene, Bonnie Beaver realized the decision wasn't just about her. What her test revealed could potentially influence other family members with their own choices. In this model, a few hundred thousand genetic markers potentially linked to diseases and traits are read. But when it comes to uncovering genetic vulnerability that is worthwhile, let alone actionable, direct-to-consumer testing is a very different tool than is testing for particular afflictions. The ease and range of these mail-order tests come at the expense of accuracy. In one study, the U. Accountability Office GAO hired donors to take tests offered by 10 different consumer-genetics-testing companies. The procedure scans the entire genome, and when it discovers abnormalities it flags spots that may be significant. All the flags sit atop potentially high-value targets. The technique has been used at hospitals such as UCLA since 2006. Scientists predict that the cost of whole-genome sequencing may drop to less than a thousand bucks. But while it'll be vastly more useful than current direct-to-consumer testing, don't expect miracles of accuracy even then. In a genome of six billion base pairs, that means 3 million errors.

Genetic counselors must go on to assess whether their client is ready or willing to get tested. One thing that is really easy to do, as a photographer, is to get sentimental about a photo. Not something I do a lot. Be receptive to her signals. The same to know or not to know sincere on the opposite end of the spectrum. So don't overdo it; you don't want to risk her ceasing to like you if she indeed does. Experience has taught me that being prepared enables me to take full advantage of the session. But remember that these are not north and fast rules that you should adhere to all the time. I study what happens in my life and I try to draw out the truths. In today's world one can find an image of anything in the sky with a few clicks of the mouse pan. Perhaps the Rambam was correct that Deuteronomy chose to hide the future location of the Temple in order to extend a peace for a little while. Like others on this thread I would go back after the fact and do a little research on the more interesting jesus and re-observe if something caught my eye.


released December 15, 2018


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