Returning genetic incidental findings without patient consent violates basic rights

Public release date: 16-May-2013
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Contact: Martha Coventry
coven002@umn.edu
612-625-2948
University of Minnesota

Upcoming paper in 'Science' pushes back against recent recommendations from the American College of Medical Genetics and Genomics

MINNEAPOLIS/ST. PAUL (05/15/2012)Informed consent is the backbone of patient care. Genetic testing has long required patient consent and patients have had a "right not to know" the results. However, as 21st century medicine now begins to use the tools of genome sequencing, an enormous debate has erupted over whether patients' rights will continue in an era of medical genomics.

Recent recommendations from the American College of Medical Genetics and Genomics (ACMG) suggest no. On March 22, the ACMG released recommendations stating that when clinical sequencing is undertaken for any medical reason, laboratories must examine 57 other specific genes to look for incidental findings. These findings must then be reported to the clinician and the patient. In an April 25 "clarification," ACMG said that failure to report these findings would be considered "unethical." The patient has no opportunity to opt-out of the testing of the 57 genes, except to decline all sequencing. The recommendations also apply to children.

In a paper to be published in 'Science 'May 16 online ahead of print, authors Susan M. Wolf, J.D. (University of Minnesota), George J. Annas, J.D., M.P.H. (Boston University), and Sherman Elias, M.D. (Northwestern University) push back against these recommendations, and offer compelling reasons why patient autonomy must remain firmly in place as science advances. Their article on Patient Autonomy and Incidental Findings in Clinical Genomics urges ACMG to reconsider their recommendations. This article is published with a reply by Amy McGuire, J.D., Ph.D. (Baylor College of Medicine) and colleagues.

Wolf, Annas, and Elias argue that, "The ACMG's 'minimum list [of 57 genes]' includes mutations in genes that patients have long been able to refuse testing for, including cancer risk mutations (such as BRCA1) and cardiovascular risk mutations." They point out that "There are many circumstances in which a patient may decline such testing and information, even if the results could open avenues for intervention. The patient may already be battling another disease, such as advanced cancer, or be late in life and see more burden than benefit in added genetic information. The patient may also fear that 'extra' results in their medical record will invite risk of discrimination."

ACMG says that applying these recommendations to children may help adult family members understand their own health risks. However, Wolf et al. point out that "this is exactly what past recommendations have rightly rejected, in limiting genetic testing and disclosure of genetic information to what is medically necessary during childhood." The authors cite long-standing policy discouraging childhood testing for adult-onset conditions. "Delaying testing and return of genetic information not medically useful in childhood allows the child to reach adulthood and then make a choice based on his or her own values."

The ACMG indicates that their list of genes to test without consent will grow. Their report says that laboratories may look for variants in other genes, "as deemed appropriate," and that ACMG will review the roster of 57 genes annually. Wolf et al. voice concern that "As the list expands, so will the scope of testing without consent." The authors urge the importance of patients' rights, especially in an era of genome sequencing when extensive genetic information can be generated on any patient.

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Public release date: 16-May-2013
[ | E-mail | Share ]

Contact: Martha Coventry
coven002@umn.edu
612-625-2948
University of Minnesota

Upcoming paper in 'Science' pushes back against recent recommendations from the American College of Medical Genetics and Genomics

MINNEAPOLIS/ST. PAUL (05/15/2012)Informed consent is the backbone of patient care. Genetic testing has long required patient consent and patients have had a "right not to know" the results. However, as 21st century medicine now begins to use the tools of genome sequencing, an enormous debate has erupted over whether patients' rights will continue in an era of medical genomics.

Recent recommendations from the American College of Medical Genetics and Genomics (ACMG) suggest no. On March 22, the ACMG released recommendations stating that when clinical sequencing is undertaken for any medical reason, laboratories must examine 57 other specific genes to look for incidental findings. These findings must then be reported to the clinician and the patient. In an April 25 "clarification," ACMG said that failure to report these findings would be considered "unethical." The patient has no opportunity to opt-out of the testing of the 57 genes, except to decline all sequencing. The recommendations also apply to children.

In a paper to be published in 'Science 'May 16 online ahead of print, authors Susan M. Wolf, J.D. (University of Minnesota), George J. Annas, J.D., M.P.H. (Boston University), and Sherman Elias, M.D. (Northwestern University) push back against these recommendations, and offer compelling reasons why patient autonomy must remain firmly in place as science advances. Their article on Patient Autonomy and Incidental Findings in Clinical Genomics urges ACMG to reconsider their recommendations. This article is published with a reply by Amy McGuire, J.D., Ph.D. (Baylor College of Medicine) and colleagues.

Wolf, Annas, and Elias argue that, "The ACMG's 'minimum list [of 57 genes]' includes mutations in genes that patients have long been able to refuse testing for, including cancer risk mutations (such as BRCA1) and cardiovascular risk mutations." They point out that "There are many circumstances in which a patient may decline such testing and information, even if the results could open avenues for intervention. The patient may already be battling another disease, such as advanced cancer, or be late in life and see more burden than benefit in added genetic information. The patient may also fear that 'extra' results in their medical record will invite risk of discrimination."

ACMG says that applying these recommendations to children may help adult family members understand their own health risks. However, Wolf et al. point out that "this is exactly what past recommendations have rightly rejected, in limiting genetic testing and disclosure of genetic information to what is medically necessary during childhood." The authors cite long-standing policy discouraging childhood testing for adult-onset conditions. "Delaying testing and return of genetic information not medically useful in childhood allows the child to reach adulthood and then make a choice based on his or her own values."

The ACMG indicates that their list of genes to test without consent will grow. Their report says that laboratories may look for variants in other genes, "as deemed appropriate," and that ACMG will review the roster of 57 genes annually. Wolf et al. voice concern that "As the list expands, so will the scope of testing without consent." The authors urge the importance of patients' rights, especially in an era of genome sequencing when extensive genetic information can be generated on any patient.

###

---

[ | E-mail | Share ]

?

AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert! system.

Source: http://www.eurekalert.org/pub_releases/2013-05/uom-rgi051513.php

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Kerry, Lavrov confident on Syria peace talks plan

By Patricia Zengerle

KIRUNA, Sweden (Reuters) - U.S. Secretary of State John Kerry and Russian Foreign Minister Sergei Lavrov said on Wednesday they believed they could pull off peace talks on Syria, where their nations back opposing sides in a war that may have cost 120,000 lives.

Differences between Russia, a main ally of President Bashar al-Assad, and the United States, which supports those trying to topple him, have long obstructed U.N. action on the turmoil that has convulsed Syria for more than two years.

But last week Kerry and Lavrov announced plans to hold a peace conference now expected to take place in Geneva in June.

"Both of us are ... very, very hopeful that within a short period of time, pieces will come together so that the world, hopefully, will be given an alternative to the violence and destruction that is taking place in Syria at this moment," Kerry said at a news conference after meeting Lavrov in Kiruna, Sweden.

"I would very much share the assessments just presented by John," Lavrov said.

He said Moscow and Washington were trying to mobilize support for the negotiations from Syria's government and opposition, as well as other countries concerned.

Kerry said the peace drive was based on a deal that has stayed a dead letter since it was announced in Geneva in June 2012 for the creation of a transitional government in Syria "with full executive authority by mutual consent" - ambiguous wording that deliberately left Assad's future role unclear.

"WORKING TOGETHER"

"That's what we're working toward and I don't think it's insignificant that at this moment in time we are finding this common ground and working closely together," Kerry said.

Syrian revolutionaries have previously demanded Assad's removal before any talks on the country's future. The main Western-backed opposition coalition is due to meet in Istanbul to consider whether to attend the new Geneva talks.

A Western diplomat in Paris said the Friends of Syria, an anti-Assad group of mainly Western and Arab countries, would meet in Jordan on May 22 to discuss the U.S.-Russian initiative. A U.S. State Department spokesman said Kerry planned to attend the meeting in Jordan but said he could not confirm the date.

Kerry and Lavrov, who met for an hour on Tuesday night on the sidelines of a meeting of the eight-nation Arctic Council, emphasized they were working in tandem on the Syria plan.

Syrian Information Minister Omran Zoabi said on Tuesday that Assad's government, fighting an insurgency that threatens to draw in Syria's neighbors, wanted specifics on the proposed conference before it decides whether to participate.

Kerry and Lavrov both said they expected Syria to attend.

Despite a push from some U.S. lawmakers for Washington to provide military aid to Syria's rebels - and to consider some military involvement such as a no-fly zone - President Barack Obama's administration wants a peaceful resolution to the war.

The pro-opposition Syrian Observatory for Human Rights, a British-based monitoring group, said on Tuesday that at least 94,000 people had been killed in the Syrian conflict, but that the real death toll was likely to be as high as 120,000.

(Additional reporting by John Irish in Paris; Editing by Alistair Lyon and Bill Trott)

Source: http://news.yahoo.com/kerry-lavrov-confident-syria-peace-talks-plan-220118620.html

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Google outs new Maps and Location APIs, brings geofencing and low power location services

Maps is one of the most useful features in Android, and today at Google I/O 2013, Mountain View announced a trio of new location services APIs to help devs to better leverage that strength. Fused Location Provider is the first, and it brings faster, more accurate location signals and delivers a low-power location mode that sips less than 1 percent of your battery while in use. Next is Geofencing, which will allow devs to set up to 100 location-based triggers for app events. The third API is called Activity Recognition, which uses accelerometer data and machine learning to figure out when you're walking, cycling or driving.

Filed under: Mobile, Google

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Source: http://www.engadget.com/2013/05/15/google-maps-location-apis-geofencing-low-power/?utm_medium=feed&utm_source=Feed_Classic&utm_campaign=Engadget

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Evolution shapes new rules for ant behavior, research finds

May 15, 2013 ? In ancient Greece, the city-states that waited until their own harvest was in before attacking and destroying a rival community's crops often experienced better long-term success.

It turns out that ant colonies that show similar selectivity when gathering food yield a similar result. The latest findings from Stanford biology Professor Deborah M. Gordon's long-term study of harvester ants reveal that the colonies that restrain their foraging except in prime conditions also experience improved rates of reproductive success.

Importantly, the study provides the first evidence of natural selection shaping collective behavior, said Gordon, who is also a senior fellow at the Stanford Woods Institute for the Environment.

A long-held belief in biology has posited that the amount of food an animal acquires can serve as a proxy for its reproductive success. The hummingbirds that drink the most nectar, for example, stand the best chance of surviving to reproduce.

But the math isn't always so straightforward. The harvester ants that Gordon studies in the desert in southeast Arizona, for instance, have to spend water to obtain water: an ant loses water while foraging, and obtains water from the fats in the seeds it eats.

The ants use simple positive feedback interactions to regulate foraging activity. Foragers wait near the opening of the nest, and bump antennae with ants returning with food. The faster outgoing foragers meet ants returning with seeds, the more ants go out to forage. (Last year, Gordon, Katie Dektar, an undergraduate, and Balaji Prabhakar, a professor of computer science and of electrical engineering at Stanford, showed that the ants' "Anternet" algorithm follows the same rules as the protocols that regulate data traffic congestion in the Internet).

Colonies differ, however, in how they use these interactions to regulate foraging. Some colonies are likely to forage less when conditions are dry. These same, more successful colonies are also more likely to forage more steadily when conditions are good.

Gordon found that it's more important for the ants to not waste water than to forage for every last piece of food. There's no survival cost to this strategy, even though the colonies sometimes forgo foraging for an entire day. Instead, not only do the colonies that hunker down on the bad days live just as long as those that go all out, they also have more offspring colonies.

"Natural selection is not favoring the behavior that sends out the most ants to get the most food, but instead regulating foraging to hold back when conditions are bad," Gordon said. "This is natural selection shaping a collective behavior exhibited by the entire colony."

Gordon's group is still investigating how the ants gauge humidity, but they have determined that the collective response of the colony to conditions is heritable from parent colony to offspring colony. Even though a daughter queen will establish her new colony so far from the parent colony that the two colonies will never interact, the offspring colonies resemble parent colonies in their sensitivity to conditions.

Although the foraging activity of the offspring colonies and the parent colony didn't entirely match up on all days, they were similar on extreme days: parent and offspring colonies made similar judgments about when to lie low or take advantage of ideal conditions.

While the region has experienced 10 to 15 years of protracted drought, and the more restrained colonies will most likely fare better reproductively as that trend continues, Gordon can't yet say whether the emphasis on sustainability evolved in response to climate change pressures.

"What's evolving here are simple rules for how ants participate in a network that regulates the collective behavior of the colony," she said.

The work is published in the May 16 issue of the journal Nature.

Source: http://feeds.sciencedaily.com/~r/sciencedaily/top_news/top_environment/~3/INyGGv6Ez-8/130515131602.htm

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Convicted abortion doc gets life in prison

PHILADELPHIA (AP) ? A Philadelphia abortion doctor convicted of killing three babies born alive at his grimy clinic was spared a possible death sentence Tuesday in a deal with prosecutors.

Dr. Kermit Gosnell gave up his right to appeal and in return will spend life in prison. Gosnell, 72, was found guilty Monday of first-degree murder in a case that became a flashpoint in the nation's abortion debate.

Former clinic employees testified that Gosnell routinely performed illegal abortions past Pennsylvania's 24-week limit, that he delivered babies who were still moving, whimpering or breathing, and that he and his assistants dispatched the newborns by "snipping" their spines, as he referred to it.

Prosecutors had sought the death penalty because Gosnell killed more than one person, and his victims were especially vulnerable given their age. But Gosnell's own advanced age had made it unlikely he would ever be executed before his appeals ran out.

Prosecutors instead agreed to two life sentences without parole, and Gosnell was to face further sentencing Wednesday: in the death of the third baby, an involuntary manslaughter conviction in the death of a patient and hundreds of lesser counts.

Gosnell has said he considered himself a pioneering inner-city doctor who helped desperate women get late-term abortions. Defense lawyer Jack McMahon said before the sentencing deal that his client's bid for acquittal was a battle.

"The media has been overwhelmingly against him," McMahon said. "But I think the jury listened to the evidence ... and they found what they found."

The gruesome details of Gosnell's operation came out more than two years ago during a grand jury investigation of prescription drug trafficking. Authorities raiding Gosnell's clinic for drugs instead found bags and bottles of fetuses, including jars of severed feet, along with bloodstained furniture, dirty medical instruments and cats roaming the premises.

Prosecution experts said one of the babies was nearly 30 weeks along when the abortion took place, and was so big that Gosnell allegedly joked the baby could "walk to the bus." A second baby was said to be alive for about 20 minutes before a clinic worker snipped the neck. A third was born in a toilet and was moving before another clinic employee severed the spinal cord, according to testimony.

A fourth baby let out a whimper before Gosnell cut the neck, prosecutors alleged. Gosnell was acquitted in that baby's death, the only one of the four in which no one testified to seeing the baby killed.

Gosnell's attorney argued that none of the fetuses was born alive and that any movements were posthumous twitching or spasms.

Pennsylvania authorities had failed to conduct routine inspections of all its abortion clinics for 15 years by the time Gosnell's facility was raided. In the scandal's aftermath, two top state health officials were fired, and Pennsylvania imposed tougher rules for clinics.

Partisans on both sides of the nation's polarized abortion debate were quick to weigh in after the verdict. Abortion foes said the case helped to illustrate the disturbing reality of abortion.

"This has helped more people realize what abortion is really about," said David O'Steen, executive director of the National Right to Life Committee. He said he hopes the case results in more states passing bills that prohibit abortion "once the unborn child can feel pain."

Supporters of legalized abortion said the case offered a preview of what poor, desperate young women could face if abortion is driven underground with more restrictive laws.

"Kermit Gosnell has been found guilty and will get what he deserves. Now, let's make sure these women are vindicated by delivering what all women deserve: access to the full range of health services including safe, high-quality and legal abortion care," said Ilyse G. Hogue, president of NARAL Pro-Choice America.

During the trial, Gosnell proved a solitary figure from beginning to end, with no friends or relatives in the courtroom, despite the fact he's been married three times and has six children, nearly all of them adults.

Gosnell did not testify, and called no witnesses in his defense. But McMahon branded prosecutors "elitist" and "racist" for pursuing his client, who is black and whose patients were mostly poor minorities.

"I wanted to be an effective, positive force in the minority community," Gosnell told The Philadelphia Daily News in a 2010 interview. "I believe in the long term I will be vindicated."

Gosnell was also convicted of infanticide, racketeering and more than 200 counts of violating Pennsylvania's abortion laws by performing third-term abortions or failing to counsel women 24 hours in advance.

The defense also contended that the 2009 death of 41-year-old Karnamaya Mongar of Woodbridge, Va., a Bhutanese immigrant who had been given repeated doses of Demerol and other powerful drugs to sedate her and induce labor, was caused by unforeseen complications and did not amount to murder, as prosecutors charged.

Bernard Smalley, a lawyer for the woman's family, said he now hopes to bring "some sense of justice and quiet to this family that's been through so much."

Source: http://news.yahoo.com/convicted-pa-abortion-doctor-gets-life-prison-201005368.html

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Passenger car drivers are more likely to die in crashes with SUVs, regardless of crash ratings

May 14, 2013 ? Most consumers who are shopping for a new car depend on good crash safety ratings as an indicator of how well the car will perform in a crash. But a new University at Buffalo study of crashes involving cars and sport utility vehicles (SUVs) has found those crash ratings are a lot less relevant than vehicle type.

The study is being presented May 16 at the annual meeting of the Society of Academic Emergency Medicine in Atlanta.

In head-on collisions between passenger cars and SUVs, the UB researchers found that drivers in passenger cars were nearly 10 times more likely to die if the SUV involved had a better crash rating. Drivers of passenger cars were more than four times more likely to die even if the passenger car had a better crash rating than the SUV.

"When two vehicles are involved in a crash, the overwhelming majority of fatalities occur in the smaller and lighter of the two vehicles," says Dietrich Jehle, MD, UB professor of emergency medicine at Erie County Medical Center and first author.

"But even when the two vehicles are of similar weights, outcomes are still better in the SUVs," he says, "because in frontal crashes, SUVs tend to ride over shorter passenger vehicles, due to bumper mismatch, crushing the occupant of the passenger car."

When crash ratings were not considered, the odds of death for drivers in passenger cars were more than seven times higher than SUV drivers in all head-on crashes. In crashes involving two passenger cars, a lower car safety rating was associated with a 1.28 times higher risk of death for the driver and a driver was 1.22 times more likely to die in a head-on crash for each point lower in the crash rating.

The UB researchers conducted the retrospective study on severe head-on motor vehicle crashes in the Fatality Analysis Reporting System (FARS) database between 1995 and 2010. The database includes all motor vehicle crashes that resulted in a death within 30 days and includes 83,521 vehicles involved in head-on crashes.

"Along with price and fuel efficiency, car safety ratings are one of the things that consumers rely on when shopping for an automobile," says Jehle. These ratings, from one to five stars, are based on data from frontal, side barrier and side pole crashes that compare vehicles of similar type, size and weight. The one to five star safety rating system was created in 1978 by the National Highway Traffic Safety Administration.

Jehle notes that after manufacturers addressed the roll-over problem with SUVs that plagued these vehicles in the 1980s and 1990s, rollover crashes are now much less common in SUVs.

"Currently, the larger SUVs are some of the safest cars on the roadways with fewer rollovers and outstanding outcomes in frontal crashes with passenger vehicles," he says.

Jehle says that prior studies on frontal crashes have found that compared to passenger cars with a 5-star crash rating, cars with a rating from one to four stars have a 7-36% increase in driver death rates.

"Passenger vehicles with excellent safety ratings may provide a false degree of confidence to the buyer regarding the relative safety of these vehicles as demonstrated by our findings," says Jehle. "Consumers should take into consideration the increased safety of SUVs in head-on crashes with passenger vehicles when purchasing a car."

Co-authors with Jehle, all from UB, are: Albert Arslan and Chirag Doshi, MD candidates in the School of Medicine and Biomedical Sciences; Joseph Consiglio, data manager/statistician for the UB Department of Emergency Medicine and a graduate student in the Department of Biostatistics in the School of Public Health and Health Professions; Juliana Wilson DO, a post-doctoral scholar in the Department of Emergency Medicine and Christine DeSanno DO, a resident in the UB Department of Emergency Medicine.

Source: http://feeds.sciencedaily.com/~r/sciencedaily/most_popular/~3/WBUOoGuICJQ/130514135417.htm

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Nearly 75% Of All Smartphones Sold In Q1 Were Android, With Samsung At 30%; Mobile Sales Overall Nearly Flat: Gartner

Gartner has just released its Q1 figures for mobile handset sales, and the key takeaway is that Android continues to steal the show, led by handset maker Samsung. Google's mobile platform now accounts for nearly 75% of all handset sales, a jump of almost 20 percentage points on a year ago, and equating to 156 million devices sold in the three-month period. Smartphones sales grew by 63 million units to 210 million for the quarter, making up nearly half of all mobile phone sales overall, at 425 million. With the number of mobile handset sales up by a mere 0.7% on a year ago, it's clear that higher-end devices are very the much growth engine for the mobile industry at the moment.

Source: http://feedproxy.google.com/~r/Techcrunch/~3/oDp5goSfP5o/

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