Ask Well: Coaxing Parents to Take Better Care of Themselves

Dear Reader,

Your dilemma of wanting to get your parents to change their ways to eat better and exercise reminds me of an old joke:

How many psychologists does it take to change a light bulb? Answer: Only one, but the light bulb has to really want to change.

Sounds like your parents may be about as motivated as the light bulb right now. Still, there are things you can do to encourage them to move in a healthier direction. But the first step should not be to hand them a book. Unless you lay some prior groundwork, that gesture may seem almost as patronizing as an impatient tone of voice – and probably as likely to backfire.

Instead, start a conversation in a caring, nonjudgmental way. Ask, don’t tell. “Say, ‘You know, I might not know what I am talking about, but I am really concerned about you,” suggested Kevin Leman, a psychologist in Tucson, Ariz., and author of 42 books on changing behavior in families and relationships. Ask simply if there is anything you can do to help.

Leading by example is also more effective than lecturing. “The son can role-model health by inviting his parents to dinner and serving healthful items that he is fairly certain they will find acceptable, or ask them if they are interested in going out dancing with him and his wife,” suggested Ann Constance, director of the Upper Peninsula Diabetes Outreach Network in Michigan.

Pleasure is a better motivator for change than pain or threats. Use the grandchildren as bait. Ask if they want to take the grandchildren to the zoo or a park that would require a good bit of walking around for everyone. Or the grandchildren could ask them to come along on one of those 2K fund-raiser-walks that many schools hold. After all, a day with the grandchildren is always a pleasure in itself. (O.K., usually a pleasure.)

Tempted to give them the gift of a health club membership? “Save your money,” Dr. Leman said. Try a more indirect (and cheaper) approach. Create a mixed-tape of up-tempo music from their era. (“Songs they listened to from the ages of 12-to-17, which is what we all listen to for the rest of our lives,” said Dr. Leman) They will enjoy it any time — maybe even while walking.

If you really want someone you love to make a change, the key is to ask them to do something small and easy first because that increases the chances they will do something larger later. Psychologists call that “the foot in the door technique,” said Adam Davey, associate professor of public health at Temple University in Philadelphia, referring to a classic 1966 experiment called “Compliance Without Pressure.” In the study, which has been duplicated by others in many forms, researchers asked people to sign a petition or place a small card in a window in their home or car about keeping California beautiful or supporting safe driving. About two weeks later, the same people were asked to put a huge sign that practically covered their entire front lawn advocating the same cause.

“A surprisingly large number of those who agreed to the small sign agreed to the billboard,” because agreeing to the first small task built a bond between asker and askee “that increases the likelihood of complying with a subsequent larger request,” Dr. Davey explained.

Any plan for behavioral change is most likely to succeed if it is very specific, measurable and achievable, according to Ms.Constance.

And the new behavior should also be integrated into daily life — and repeated until it becomes a habit. For example, if you want to walk more, start with a 10-minute walk after dinner on Monday, Wednesday and Friday, Ms. Constance suggested. The next week, bump it up to 12 minutes.

Don’t give up, even if you meet initial resistance — it is never too late for your parents or you or any of us to change. “Taking up an exercise program into one’s 80s and 90s to build strength and flexibility can result in very tangible and enduring benefits in a surprisingly short time,” insisted Dr Davey.

As for instructive reading, Dr. Leman is partial to one of his own books, “Have a New You by Friday,” and Dr. Davey recommends “Biomarkers: The 10 Keys to Prolonging Vitality,” by William Evans. Ms. Constance recommends the Centers for Disease Control and Prevention’s Web site on physical activity and exercise tips for the elderly, as well as the National Institute of Health’s site on the DASH diet.

Read More..

Ask Well: Coaxing Parents to Take Better Care of Themselves

Dear Reader,

Your dilemma of wanting to get your parents to change their ways to eat better and exercise reminds me of an old joke:

How many psychologists does it take to change a light bulb? Answer: Only one, but the light bulb has to really want to change.

Sounds like your parents may be about as motivated as the light bulb right now. Still, there are things you can do to encourage them to move in a healthier direction. But the first step should not be to hand them a book. Unless you lay some prior groundwork, that gesture may seem almost as patronizing as an impatient tone of voice – and probably as likely to backfire.

Instead, start a conversation in a caring, nonjudgmental way. Ask, don’t tell. “Say, ‘You know, I might not know what I am talking about, but I am really concerned about you,” suggested Kevin Leman, a psychologist in Tucson, Ariz., and author of 42 books on changing behavior in families and relationships. Ask simply if there is anything you can do to help.

Leading by example is also more effective than lecturing. “The son can role-model health by inviting his parents to dinner and serving healthful items that he is fairly certain they will find acceptable, or ask them if they are interested in going out dancing with him and his wife,” suggested Ann Constance, director of the Upper Peninsula Diabetes Outreach Network in Michigan.

Pleasure is a better motivator for change than pain or threats. Use the grandchildren as bait. Ask if they want to take the grandchildren to the zoo or a park that would require a good bit of walking around for everyone. Or the grandchildren could ask them to come along on one of those 2K fund-raiser-walks that many schools hold. After all, a day with the grandchildren is always a pleasure in itself. (O.K., usually a pleasure.)

Tempted to give them the gift of a health club membership? “Save your money,” Dr. Leman said. Try a more indirect (and cheaper) approach. Create a mixed-tape of up-tempo music from their era. (“Songs they listened to from the ages of 12-to-17, which is what we all listen to for the rest of our lives,” said Dr. Leman) They will enjoy it any time — maybe even while walking.

If you really want someone you love to make a change, the key is to ask them to do something small and easy first because that increases the chances they will do something larger later. Psychologists call that “the foot in the door technique,” said Adam Davey, associate professor of public health at Temple University in Philadelphia, referring to a classic 1966 experiment called “Compliance Without Pressure.” In the study, which has been duplicated by others in many forms, researchers asked people to sign a petition or place a small card in a window in their home or car about keeping California beautiful or supporting safe driving. About two weeks later, the same people were asked to put a huge sign that practically covered their entire front lawn advocating the same cause.

“A surprisingly large number of those who agreed to the small sign agreed to the billboard,” because agreeing to the first small task built a bond between asker and askee “that increases the likelihood of complying with a subsequent larger request,” Dr. Davey explained.

Any plan for behavioral change is most likely to succeed if it is very specific, measurable and achievable, according to Ms.Constance.

And the new behavior should also be integrated into daily life — and repeated until it becomes a habit. For example, if you want to walk more, start with a 10-minute walk after dinner on Monday, Wednesday and Friday, Ms. Constance suggested. The next week, bump it up to 12 minutes.

Don’t give up, even if you meet initial resistance — it is never too late for your parents or you or any of us to change. “Taking up an exercise program into one’s 80s and 90s to build strength and flexibility can result in very tangible and enduring benefits in a surprisingly short time,” insisted Dr Davey.

As for instructive reading, Dr. Leman is partial to one of his own books, “Have a New You by Friday,” and Dr. Davey recommends “Biomarkers: The 10 Keys to Prolonging Vitality,” by William Evans. Ms. Constance recommends the Centers for Disease Control and Prevention’s Web site on physical activity and exercise tips for the elderly, as well as the National Institute of Health’s site on the DASH diet.

Read More..

Disruptions: Disruptions: 3-D Printing Is on the Fast Track

Will the future be printed in 3-D?

At first glance, looking at past predictions about the future of technology, prognosticators got a whole lot wrong. The Web is a garbage dump of inaccurate guesses about the year 2000, 2010 and beyond. Flying cars, robotic maids and jet packs still are nowhere near a reality.

Yet the prediction that 3-D printers will become a part of our daily lives is happening much sooner than anyone anticipated. These printers can produce objects, even rather intricate ones, by printing thin layer after layer of plastic, metal, ceramics or other materials. And the products they make can be highly customized.

Last week, President Obama cited this nascent technology during his State of the Union address — as if everyone already knew what the technology was.

He expressed hope that it was a way to rejuvenate American manufacturing. “A once-shuttered warehouse is now a state-of-the art lab where new workers are mastering the 3-D printing that has the potential to revolutionize the way we make almost everything,” Mr. Obama said. He has pushed new technologies before, like solar and wind power, as remedies for our nation’s problems, and those attempts have only revived the debate about the limitations of government industrial policy.

But this one shows more promise. The question is, can the United States get a foothold in manufacturing one 3-D printer at a time?

Hod Lipson, an associate professor and the director of the Creative Machines Lab at Cornell, said “3-D printing is worming its way into almost every industry, from entertainment, to food, to bio- and medical-applications.”

It won’t necessarily directly create manufacturing jobs, except perhaps for the printers themselves. Dr. Lipson, the co-author of “Fabricated: The New World of 3D Printing,” said that the technology “is not going to simply replace existing manufacturing anytime soon.” But he said he believed that it would give rise to new businesses. “The bigger opportunity in the U.S. is that it opens and creates new business models that are based on this idea of customization.”

In addition to the lab that the president mentioned, a federally financed manufacturing innovation institute in Youngstown, Ohio, schools are embracing the technology. The University of Virginia has been working to introduce 3-D printers into some programs from kindergarten through 12th grade in Charlottesville to prepare students for a new future in manufacturing.

“We have 3-D printers in classrooms, and in one example, we’re teaching kids how to design and print catapults that they then analyze for efficiency,” said Glen L. Bull, professor and co-director of the Center for Technology and Teacher Education. “We believe that every school in America could have a 3-D printer in the classroom in the next few years.”

The education system may want to speed things up. The time between predictions for 3-D printers and the reality of what they can accomplish is compressing rapidly.

For example, in 2010, researchers at the University of Southern California said that another decade would pass before we could build a home using a 3-D printer. Yet last week, Softkill Design, a London architecture collective, announced that it planned to make the first such home — which it will assemble in a single day — later this year. The home isn’t that pretty, and will look more like a calcified spider web than a cozy house, but it will show it can be done. The price of 3-D printers has also dropped sharply over the last two years, with machines that once cost $20,000, now at $1,000 or less. That’s partly because Chinese companies are driving down prices. Yes, China sees the opportunity in these things, even though the technology may undermine some of its manufacturing advantages.

“When it costs you the same amount of manufacturing effort to make advanced robotic parts as it does to manufacture a paperweight, that really changes things in a profound way,” Dr. Lipson said.

This leaves us with one more question about the future: When will these 3-D printers be able to make us flying cars, robotic maids and jet packs?

E-mail: bilton@nytimes.com

Read More..

Maoists Block Deal to Break Nepal’s Long Political Deadlock

NEW DELHI — Nepal’s major political parties failed on Tuesday to complete an expected agreement to settle a years-long political standoff, after Maoists insisted that the accord include amnesty for past crimes.

The amnesty issue derailed a tentative deal reached on Monday to appoint as interim prime minister the chief justice of the country’s supreme court, Khil Raj Regmi, to lead the country until elections in June. Now it appears that the wrangling will continue indefinitely, worsening the paralysis of the country’s civic functions.

Nepal has been trying to establish a working representative democracy since 2008, when a constituent assembly was elected to replace the former monarchy. But the assembly has been unable to draw up a constitution or settle on when or how to hold further elections. Maoists, who fought a long civil war against the monarchy, now control the most important government posts, but the ethnic, caste, religious, ideological and regional differences that permeate Nepalese society have made even the most basic political agreements impossible.

Meanwhile, the country’s judiciary has been arresting former Maoist fighters from the bitter civil war, which cost at least 13,000 lives, prompting the Maoist party to call for amnesty and for a less punitive reconciliation process, such as a parliamentary committee that the party could influence.

“Amnesty is still under consideration,” said Devendra Poudel, adviser to the present Maoist prime minister, Baburam Bhattarai. “Instead of addressing one or two issues separately, why not deal with them all in the same package?”

But the country’s other political parties and civil-society organizations have insisted on a process in which war criminals are jailed.

“The Maoists are very much afraid of the regular judiciary of this country,” said Rajendra Dahal, a spokesman for President Ram Baran Yadav, a leader of the centrist Nepalese Congress party. “But until there is an agreement, they will control the government,” he said of the Maoists. “So they benefit from the standoff.”

Mr. Dahal said that the president had welcomed the tentative deal to put the chief justice in charge temporarily. “The president’s single mission is to have elections,” he said early Tuesday. “Any way the parties get some consensus in the goal of having elections, the president will support.”

By late Tuesday evening, however, the optimism surrounding the tentative agreement had faded.

Kanak Mani Dixit, a civil rights activist and commentator, said he was worried that the Maoists supported the deal in hopes of discrediting the Supreme Court, which he said is the last civic institution in Nepal with any credibility.

“The Maoists agreed because they have already destroyed every other important institution of the state,” Mr. Dixit said.

Mr. Regmi was expected to be appointed to a three-month term as prime minister, following which he would return to the court. If Mr. Regmi had been unable to oversee elections in that time, a new agreement would have had to be reached.

The Maoist leader, Mr. Bhattarai, rejected all previous proposals to replace him, and other political parties have refused to allow elections while Mr. Bhattarai and his allies hold the crucial levers of government, saying that his oversight would make the elections unfair.

In the meantime, basic civil functions in Nepal have begun to fail one after another, and the country’s economy, never robust, has stalled. As a result, Nepalese have been emigrating to neighboring countries in large numbers, to the exasperation particularly of India, where many of the migrants settle.

Read More..

Draghi Seeks to Quiet Talk About Global Currency War

BRUSSELS — The president of the European Central Bank sought Monday to ease fears that countries including Japan were deliberately weakening their currencies and that European exporters were threatened by a round of competitive devaluations among the world’s major economies.

The comments by Mario Draghi appeared to show how some of the world’s most senior economic policy makers were continuing to grapple with the prospect of a “currency war,” even after finance ministers from the Group of 20 pledged over the weekend to refrain from devaluing their currencies to gain a competitive advantage in global trade.

During an afternoon of scheduled testimony before the European Parliament’s Economic and Finance Committee in Brussels, Mr. Draghi noted that the euro’s current exchange rate was close to its long-term average. He advised officials not to make alarmist comments.

“Most of the exchange rate movements that we have seen were not explicitly targeted; they were the result of domestic macroeconomic policies meant to boost the economy,” Mr. Draghi told the committee, without mentioning any countries by name. “In this sense, I find really excessive any language referring to currency wars.”

But Mr. Draghi also seemed to suggest that central banks could succumb to mutual suspicion about whether they were deliberately seeking to set exchange rates. “The less we talk about this, the better it is,” he said.

Underscoring the point, Mr. Draghi said he had “urged all parties” to exercise “very, very strong verbal discipline” at the G-20 finance ministers’ meeting in Moscow over the weekend.

The euro hit a record of ¥127.18 on Feb. 2, up from ¥114.48 at the start of the year. It stood at just ¥94.31 in July 2012. The euro traded at ¥125.46 on Monday, up slightly, and was flat against the dollar, at $1.3352.

Since the rapid strengthening of the euro against the yen and other major currencies, there has been a concerted push by industrialized nations to convey the message that they will let the markets determine the value of their currencies.

Last week the Group of 7 sought to quell fears of a developing currency war. Then, over the weekend, the G-20 finance ministers issued a statement saying they had concluded that loose monetary policy, including steps to weaken currencies, were acceptable if used as a means to stimulate domestic growth. But they also warned that such policies should not be used to benefit a country’s position in global trade.

Guntram B. Wolff, the deputy director of Bruegel, a research organization, said that he believed Japan’s central bank policy makers were carrying out an expansionary monetary policy in an appropriate way — as a means to spur economic growth, not as a way to aid Japanese exporters.

Instead, Mr. Wolff said, Mr. Draghi might be concerned about the U.S. Federal Reserve, where policy makers are considering continuing their expansionist monetary policy until the unemployment rate falls significantly, and about the Bank of England, which may end up pursuing similar policies as it revises the way it sets goals for economic growth.

“The bigger question is what central banks in the developed world are doing — I’m thinking here about the Bank of England and the Federal Reserve — and whether we have a danger of competitive devaluation,” Mr. Wolff said. “While we claim that all of this is done for domestic purposes, the internal and external goal can become the same, and then you have the risk that this turns toxic.”

A loose monetary policy intended to spur growth often has the effect of devaluing a currency, making a country’s exports more affordable and its competitors’ exports more expensive. For example, a strong euro means that exports like cars and wines become more expensive abroad. That puts European producers at a disadvantage in competing with foreign producers on world markets.

Yet a strong euro also brings some advantages for Europe. Certain imports — like energy, in the form of oil and natural gas — become more affordable.

Over the past few years, emerging-market countries like Brazil have openly accused slow-growing advanced countries like the United States of unfairly pushing down the value of their currencies with their aggressive monetary policies. And, for years, the United States has accused export-reliant emerging economies, in particular China, of manipulating their currencies, too.

More recently, in Japan, stimulus programs backed by the newly elected prime minister, Shinzo Abe, have kept interest rates near zero and flooded the economy with money, which has reduced the cost of Japanese products around the world.

In Europe, while confidence has grown that the Union will be able to manage its sovereign debt crisis, the euro has made significant gains against the dollar and other currencies. That is making European exports more expensive, a factor that could hamper growth.

The gains have prompted François Hollande, the president of France — which has traditionally taken a more interventionist stance in economic matters — to call for a European exchange-rate policy.

Mr. Draghi did allow that the relative strength of the euro “is important for growth and price stability” and that “to the downside,” an “appreciation of the euro is a risk.” He said the E.C.B. would assess whether the exchange rate was having an effect on inflation.

But for now, Mr. Hollande has very little traction on the issue. Jeroen Dijsselbloem, the newly appointed president of the Eurogroup of euro zone finance ministers, gave the French request short shrift this month, and a senior German official has decried the French initiative as a poor substitute for policy overhauls.

“Can you have a managed exchange rate in Europe?” asked Karel Lannoo, the chief executive of the Center for European Policy Studies, a research organization in Brussels. “Probably not, when you consider how hard it would be to agree on a rate and the means to maintain it. ”

Read More..

DNA Analysis, More Accessible Than Ever, Opens New Doors

Matt Roth for The New York Times

Sam Bosley of Frederick, Md., going shopping with his daughter, Lillian, 13, who has a malformed brain and severe developmental delays, seizures and vision problems. More Photos »

Debra Sukin and her husband were determined to take no chances with her second pregnancy. Their first child, Jacob, who had a serious genetic disorder, did not babble when he was a year old and had severe developmental delays. So the second time around, Ms. Sukin had what was then the most advanced prenatal testing.

The test found no sign of Angelman syndrome, the rare genetic disorder that had struck Jacob. But as months passed, Eli was not crawling or walking or babbling at ages when other babies were.

“Whatever the milestones were, my son was not meeting them,” Ms. Sukin said.

Desperate to find out what is wrong with Eli, now 8, the Sukins, of The Woodlands, Tex., have become pioneers in a new kind of testing that is proving particularly helpful in diagnosing mysterious neurological illnesses in children. Scientists sequence all of a patient’s genes, systematically searching for disease-causing mutations.

A few years ago, this sort of test was so difficult and expensive that it was generally only available to participants in research projects like those sponsored by the National Institutes of Health. But the price has plunged in just a few years from tens of thousands of dollars to around $7,000 to $9,000 for a family. Baylor College of Medicine and a handful of companies are now offering it. Insurers usually pay.

Demand has soared — at Baylor, for example, scientists analyzed 5 to 10 DNA sequences a month when the program started in November 2011. Now they are doing more than 130 analyses a month. At the National Institutes of Health, which handles about 300 cases a year as part of its research program, demand is so great that the program is expected to ultimately take on 800 to 900 a year.

The test is beginning to transform life for patients and families who have often spent years searching for answers. They can now start the grueling process with DNA sequencing, says Dr. Wendy K. Chung, professor of pediatrics and medicine at Columbia University.

“Most people originally thought of using it as a court of last resort,” Dr. Chung said. “Now we can think of it as a first-line test.”

Even if there is no treatment, there is almost always some benefit to diagnosis, geneticists say. It can give patients and their families the certainty of knowing what is wrong and even a prognosis. It can also ease the processing of medical claims, qualifying for special education services, and learning whether subsequent children might be at risk.

“Imagine the people who drive across the whole country looking for that one neurologist who can help, or scrubbing the whole house with Lysol because they think it might be an allergy,” said Richard A. Gibbs, the director of Baylor College of Medicine’s gene sequencing program. “Those kinds of stories are the rule, not the exception.”

Experts caution that gene sequencing is no panacea. It finds a genetic aberration in only about 25 to 30 percent of cases. About 3 percent of patients end up with better management of their disorder. About 1 percent get a treatment and a major benefit.

“People come to us with huge expectations,” said Dr. William A. Gahl, who directs the N.I.H. program. “They think, ‘You will take my DNA and find the causes and give me a treatment.’ ”

“We give the impression that we can do these things because we only publish our successes,” Dr. Gahl said, adding that when patients come to him, “we try to make expectations realistic.”

DNA sequencing was not available when Debra and Steven Sukin began trying to find out what was wrong with Eli. When he was 3, they tried microarray analysis, a genetic test that is nowhere near as sensitive as sequencing. It detected no problems.

“My husband and I looked at each other and said, ‘The good news is that everything is fine; the bad news is that everything is not fine,’ ” Ms. Sukin said.

In November 2011, when Eli was 6, Ms. Sukin consulted Dr. Arthur L. Beaudet, a medical geneticist at Baylor.

“Is there a protein missing?” she recalled asking him. “Is there something biochemical we could be missing?”

By now, DNA sequencing had come of age. Dr. Beaudet said that Eli was a great candidate, and it turned out that the new procedure held an answer.

A single DNA base was altered in a gene called CASK, resulting in a disorder so rare that there are fewer than 10 cases in all the world’s medical literature.

“It really became definitive for my husband and me,” Ms. Sukin said. “We would need to do lifelong planning for dependent care for the rest of his life.”

Now, when doctors bill for medical services, insurers pay without as many questions. And Eli’s schools recognize how profound his needs are. “This isn’t just some kid with dyslexia,” his mother said, adding: “My son needs someone who literally is holding his hand. He runs, he doesn’t know ‘no.’ And he does not talk.”

The typical patient with a mystery disease has neurological problems, and is often a baby or a child. There are reasons for that.

Read More..

DNA Analysis, More Accessible Than Ever, Opens New Doors

Matt Roth for The New York Times

Sam Bosley of Frederick, Md., going shopping with his daughter, Lillian, 13, who has a malformed brain and severe developmental delays, seizures and vision problems. More Photos »

Debra Sukin and her husband were determined to take no chances with her second pregnancy. Their first child, Jacob, who had a serious genetic disorder, did not babble when he was a year old and had severe developmental delays. So the second time around, Ms. Sukin had what was then the most advanced prenatal testing.

The test found no sign of Angelman syndrome, the rare genetic disorder that had struck Jacob. But as months passed, Eli was not crawling or walking or babbling at ages when other babies were.

“Whatever the milestones were, my son was not meeting them,” Ms. Sukin said.

Desperate to find out what is wrong with Eli, now 8, the Sukins, of The Woodlands, Tex., have become pioneers in a new kind of testing that is proving particularly helpful in diagnosing mysterious neurological illnesses in children. Scientists sequence all of a patient’s genes, systematically searching for disease-causing mutations.

A few years ago, this sort of test was so difficult and expensive that it was generally only available to participants in research projects like those sponsored by the National Institutes of Health. But the price has plunged in just a few years from tens of thousands of dollars to around $7,000 to $9,000 for a family. Baylor College of Medicine and a handful of companies are now offering it. Insurers usually pay.

Demand has soared — at Baylor, for example, scientists analyzed 5 to 10 DNA sequences a month when the program started in November 2011. Now they are doing more than 130 analyses a month. At the National Institutes of Health, which handles about 300 cases a year as part of its research program, demand is so great that the program is expected to ultimately take on 800 to 900 a year.

The test is beginning to transform life for patients and families who have often spent years searching for answers. They can now start the grueling process with DNA sequencing, says Dr. Wendy K. Chung, professor of pediatrics and medicine at Columbia University.

“Most people originally thought of using it as a court of last resort,” Dr. Chung said. “Now we can think of it as a first-line test.”

Even if there is no treatment, there is almost always some benefit to diagnosis, geneticists say. It can give patients and their families the certainty of knowing what is wrong and even a prognosis. It can also ease the processing of medical claims, qualifying for special education services, and learning whether subsequent children might be at risk.

“Imagine the people who drive across the whole country looking for that one neurologist who can help, or scrubbing the whole house with Lysol because they think it might be an allergy,” said Richard A. Gibbs, the director of Baylor College of Medicine’s gene sequencing program. “Those kinds of stories are the rule, not the exception.”

Experts caution that gene sequencing is no panacea. It finds a genetic aberration in only about 25 to 30 percent of cases. About 3 percent of patients end up with better management of their disorder. About 1 percent get a treatment and a major benefit.

“People come to us with huge expectations,” said Dr. William A. Gahl, who directs the N.I.H. program. “They think, ‘You will take my DNA and find the causes and give me a treatment.’ ”

“We give the impression that we can do these things because we only publish our successes,” Dr. Gahl said, adding that when patients come to him, “we try to make expectations realistic.”

DNA sequencing was not available when Debra and Steven Sukin began trying to find out what was wrong with Eli. When he was 3, they tried microarray analysis, a genetic test that is nowhere near as sensitive as sequencing. It detected no problems.

“My husband and I looked at each other and said, ‘The good news is that everything is fine; the bad news is that everything is not fine,’ ” Ms. Sukin said.

In November 2011, when Eli was 6, Ms. Sukin consulted Dr. Arthur L. Beaudet, a medical geneticist at Baylor.

“Is there a protein missing?” she recalled asking him. “Is there something biochemical we could be missing?”

By now, DNA sequencing had come of age. Dr. Beaudet said that Eli was a great candidate, and it turned out that the new procedure held an answer.

A single DNA base was altered in a gene called CASK, resulting in a disorder so rare that there are fewer than 10 cases in all the world’s medical literature.

“It really became definitive for my husband and me,” Ms. Sukin said. “We would need to do lifelong planning for dependent care for the rest of his life.”

Now, when doctors bill for medical services, insurers pay without as many questions. And Eli’s schools recognize how profound his needs are. “This isn’t just some kid with dyslexia,” his mother said, adding: “My son needs someone who literally is holding his hand. He runs, he doesn’t know ‘no.’ And he does not talk.”

The typical patient with a mystery disease has neurological problems, and is often a baby or a child. There are reasons for that.

Read More..

Rise of Drones in U.S. Spurs Efforts to Limit Uses

Colin Diltz/The Seattle Times, via Associated Press

A Seattle police officer, Jim Britt, with a drone in October. Seattle later banned use of the devices.

They can record video images and produce heat maps. They can be used to track fleeing criminals, stranded hikers — or just as easily, political protesters. And for strapped police departments, they are more affordable than helicopters.

Drones are becoming a darling of law enforcement authorities across the country. But they have given rise to fears of government surveillance, in many cases even before they take to the skies. And that has prompted local and state lawmakers from Seattle to Tallahassee to outline how they can be used by police or to ground them altogether.

Although surveillance technologies have become ubiquitous in American life, like license plate readers or cameras for catching speeders, drones have evoked unusual discomfort in the public consciousness.

“To me, it’s Big Brother in the sky,” said Dave Norris, a city councilman in Charlottesville, Va., which this month became the first city in the country to restrict the use of drones. “I don’t mean to sound conspiratorial about it, but these drones are coming, and we need to put some safeguards in place so they are not abused.”

In Charlottesville, police officers are prohibited from using in criminal cases any evidence obtained by drones, also known as unmanned aerial vehicles. Never mind that the city police department does not have a drone, nor has it suggested buying one. The police are not barred from using drones for other efforts, like search and rescue.

Mr. Norris said the advent of new policing technologies poses new policy dilemmas for his city.

Charlottesville permits the police to install cameras temporarily in areas known for drug dealing, but it has rebuffed a police request to install cameras along its downtown shopping corridor. It has also chosen not to install cameras at traffic lights to intercept speeding cars, as is common elsewhere.

“Drones are capable of taking surveillance to a whole new level,” Mr. Norris said.

Last week, the Seattle Police Department agreed to return its two still-unused drones to the manufacturer after Mayor Michael McGinn answered public protests by banning their use. On Thursday, the Alameda County Board of Supervisors in Oakland, Calif., listened to the county sheriff’s proposal to use federal money to buy a four-pound drone to help his officers track suspected criminals — and then listened to raucous opposition from the antidrone lobby, including a group that uses the Twitter handle @N.O.M.B.Y., short for Not Over My Back Yard.

This week, members of Congress introduced a bill that would prohibit drones from conducting what it called “targeted surveillance” of individuals and property without a warrant.

A federal law enacted last year paved the way for drones to be used commercially and made it easier for government agencies to obtain them. The Department of Homeland Security offered grants to help local law enforcement buy them. Drone manufacturers began to market small, lightweight devices specifically for policing. Drones are already used to monitor movement on the United States’ borders and by a handful of police departments, and emergency services agencies around the country are just beginning to explore their uses.

The Federal Aviation Administration has received about 80 requests, including some from police and other government agencies, for clearance to fly drones, according to a Freedom of Information Act request filed by the Electronic Frontier Foundation, which seeks to limit their use for police surveillance.

Law enforcement authorities say drones can be a cost-effective technology to help with a host of policing efforts, like locating bombs, finding lost children, monitoring weather and wildlife or assisting rescue workers in natural disasters.

“In this time of austerity, we are always looking for sensible and cost-effective methods to improve public safety,” said Capt. Tom Madigan of the Alameda County Sheriff’s Department. “We are not looking at military-grade Predator drones. They are not armed.”

For now, drones for civilian use run on relatively small batteries and fly short distances. In principle, various sensors, including cameras, can be attached to them. But there is no consensus in law on how the data collected can be used, shared or stored.

This article has been revised to reflect the following correction:

Correction: February 18, 2013

An earlier version of this article rendered incorrectly part of the name of the federal department that offered grants to local law enforcement agencies to purchase drones. It is the Department of Homeland Security, not Services.

Read More..

India Ink: Image of the Day: Feb. 18

Read More..

A First Step on Continent for Google on Use of Content

PARIS — Publishers in France say they have struck an innovative agreement with Google on the use of their content online. Their counterparts elsewhere in Europe, however, say the French gave in too easily to the Internet giant.

The deal was signed this month by President François Hollande of France and Eric E. Schmidt, the executive chairman of Google, who called it a breakthrough in the tense relationship between publishers and Google, and as a possible model for other countries to follow.

Under the deal, Google agreed to set up a fund, worth €60 million, or $80 million, over three years, to help publishers develop their digital units. The two sides also pledged to deepen business ties, using Google’s online tools, in an effort to generate more online revenue for the publishers, who have struggled to counteract dwindling print revenue.

But the French group, representing newspaper and magazine publishers with an online presence, as well as a variety of other news-oriented Web sites, yielded on its most important demand: that Google and other search engines and “aggregators” of news should start paying for links to their content.

Google, which insists that its links provide a service to publishers by directing traffic to their sites, had fiercely resisted any change in the principle of free linking.

The agreement dismayed members of the European Publishers Council, a lobbying group in Brussels, which has been pushing for a fundamental change in the relationship between publishers and Google. The group criticized the French publishers for breaking ranks and striking a separate business agreement that has no statutory standing.

The deal “does not address the continuing problem of unauthorized reuse and monetization of content, and so does not provide the online press with the financial certainty or mechanisms for legal redress which it needs to build sustainable business models and ensure its continued investment in high-quality content,” Angela Mills Wade, executive director of the publishers council, said in a statement.

German publishers were also scornful, with Anja Pasquay, a spokeswoman for the German Newspaper Publishers’ Association, saying: “Obviously the French position isn’t one that we would favor. This is not the solution for Germany.”

Germany has been in the forefront of the push to get Google to share with online news publishers some of the billions of euros that the company earns from the sale of advertising. A proposed law, endorsed by the government of Chancellor Angela Merkel and working its way through the federal legislature, would grant a new form of copyright to digital publishers. If enacted, it could allow publishers to charge search engines or aggregators for displaying even snippets of news articles alongside links to other Web sites.

Mr. Hollande had vowed to introduce similar legislation this winter if Google and the publishers did not come to terms. It appears that Google, which had threatened to stop indexing French Web sites’ content if it had to pay for links, has sidelined the threat of legislation, at least for now; the agreement will be reviewed after three years, Mr. Hollande has said.

Under the deal, Google says it will help the publishers use several of its digital advertising services, including AdSense, AdMob and Ad Exchange, more effectively.

Publishers are already free to use these services, and it was not immediately clear how they would be able to generate more revenue from them; this part of the accord remains confidential, both sides say, because they are still negotiating the fine print.

“This agreement can help accelerate the move toward greater advertising revenues in the digital world,” said Marc Schwartz of Mazars, a consulting firm, who is serving as an independent mediator in the talks. “I’m not saying we have done everything, but it’s a first step in the right direction.”

More has been said about the planned innovation fund. Publishers will submit proposals to the fund, which will select ideas to finance and develop, with the involvement of Google engineers.

“The idea is that it would inject innovation into the sector in France,” said Simon Morrison, copyright policy manager at Google.

Read More..