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Science Policy Around the Web – March 3, 2015

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By: Cheryl Jacobs Smith, Ph.D

photo credit: Flickr heart via photopin (license)

Science and Health Policy

Younger Women Hesitate To Say They’re Having A Heart Attack

Each year more than 15,000 women under the age of 55 die of heart disease in the United States. Interestingly enough, younger women are twice as likely to die after being hospitalized for a heart attack as men in the same age group. In a small study in Circulation: Cardiovascular Quality and Outcomes, Lichtman and her colleagues investigated why younger women delay getting help. The researchers conducted in-depth interviews with 30 women, ages 30 to 55, who had been hospitalized after a heart attack. It turned out that many had trouble recognizing the symptoms of a heart attack. Many women cited that they had not ‘experienced the Hollywood heart attack’. This is in part due to early clinical research into heart disease where the clinical subjects were men. Only when the studies started to include women did researchers and clinicians identify that there are gender-specific symptoms to a heart attack. Men experience the ‘Holly wood heart attack’ where women experience vague symptoms like nausea or pain down their arms. Moreover, several women reported that their doctors initially misdiagnosed the pain. This within itself highlights the unconscious bias of female hysteria that dates back to ancient times. Hopefully this study increases awareness of what social factors impact how heart disease is diagnosed in women and spurs additional studies to validate their findings. Heart disease is the third leading cause of death for women ages 35 to 44, and it’s the second leading cause of death for women 45 to 54, according to the Centers for Disease Control and Prevention (Cancer is the No. 1 cause). Therefore, it is of utmost importance to better educate both clinicians and the general public of the differences in heart disease symptoms between men and women. (Maanvi Singh, NPR)

 

Health Policy – Cancer

Cancer Breakthroughs Are Needed In Policy As Well As Science

Since 1990, the number of cancer-related deaths and new cancer diagnosis has been on a negative decline. Although cancer discoveries and cancer treatment has been improving, new insights to how to meet the challenges of affording high-quality treatment and delivery of excellent cancer care is needed. The economic burden of cancer care in the U.S. is expected to reach more than $170 billion per year by 2020. Some say expensive medicines are the culprits. However, spending on cancer treatment as a share of overall healthcare expenditures in the U.S. has not changed significantly in 50 years. To better measure the burden of cancer treatment in the U.S., it would be beneficial to have more transparency when it comes to cancer treatment billing—not only cancer medication costs. This likely would reduce large variations in the cost of the same services between different cancer-care providers. Additionally, the U.S. Food and Drug Administration’s oncology division has teamed with academia and industry in efforts to accelerate cancer R&D—exploring “adaptive” clinical trials that steer patients to the most appropriate trials through “master protocol agreements.” With these efforts and more there is a growing consensus that cancer care and treatment needs to be reformed. Hopefully with the raised awareness this will lead to further scientific breakthroughs to reduce the overall burden of cancer care treatment and deliver the kind of outcomes that cancer patients deserve and have been patiently waiting for. (John Lechleiter, Forbes)

 

Bioethics – Ebola

Bioethics Commission: Ebola Teaches Us Public Health Preparedness Requires Ethics Preparedness

The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) advises the President and the Administration on ethical practices that promote research, healthcare delivery, and scientific innovation as a means of improving public health. The Commission decided to report its findings from the Ebola epidemic to highlight the successes and failures of the U.S. infectious disease protocol. From the perspective of Commission Chair, Dr. Gutmann, there is much to be improved. “The Ebola epidemic in western Africa overwhelmed fragile health systems, killed thousands of people, and highlighted major inadequacies in our ability to respond to global public health emergencies,” Commission Chair Amy Gutmann, Ph.D., said. “It demonstrated the dire need to prepare before the next epidemic. A failure to prepare and a failure to follow good science — for example, by not developing vaccines and not supporting health care providers — will lead to needless deaths.” “Public health preparedness requires ethics preparedness,” Gutmann said. “We need to be prepared, for example, to communicate early and often during an Ebola epidemic — drawing upon the best scientific evidence — why not to quarantine asymptomatic individuals. Needlessly restricting the freedom of expert and caring health care workers is both morally wrong and counterproductive; it will do more to lose than to save lives.” The Bioethics Commission’s seven recommendations offer targeted policy and research design suggestions. The Bioethics Commission sets a critical framework from which the U.S. can work off of to improve its education and outreach concerning future public health epidemics both domestically and abroad. (Presidential Commission for the Study of Bioethical Issues)

 

 

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March 3, 2015 at 9:00 am

Science Policy Around the Web – March 1, 2015

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By: Elisavet Serti, Ph.D

International Science Policy

Scientific review labels U.N development goals as vague, weak or meaningless.

The Sustainable Development Goals (SDGs), a major policy project being currently developed from the United Nations, “are fairly tales, dressed in the bureaucratese of intergovernmental narcissism” stated the editor of the Lancet scientific journal. A panel of scientists reviewed the 169 goals and appeared supportive of the general concept but concluded that the countries will struggle to achieve them unless the targets are clarified and quantified. These goals range from ending extreme poverty, securing equal access to justice and identifying sustainable energy sources to expanding marine conservation and ending poaching of wildlife. There has been good progress toward these goals, according to the United Nations; for example, the percentage of children under the age of 5 who were affected from poor nutrition dropped from 40% in 1990 to 25% in 2012. Child mortality has also declined almost 50% over the same period.

Only 29% of the 169 SDGs are well defined; the rest lack specific endpoints and time frames and a smaller proportion cant be measured accurately. For example, scientists support that some of these targets can be more specific, such as halving the number of people who lack enough water. Another example is goal 7: “Ensure access to affordable, reliable, sustainable and modern energy for all.”   In this goal the access is not defined and is considered weak and potentially subject to loopholes. Overall, 54% of the SDGs need to be strengthened and 17% are weak or redundant. The whole project will be discussed by the full membership of the United Nations this summer and the announcement of the final SDG list is expected to be announced at a September summit. (Erik Stodstad, Science)

 

Vaccine Science

Advancing the science of vaccination

Vaccines are medical science’s most powerful weapons that have led to increase of lifespan and have eradicated numerous infectious lethal pathogens. Louis Pasteur, who discovered in 1879 the first vaccine against a disease called chicken cholera, is considered the father of vaccination.

Numerous reports that oppose the whole idea of vaccination, the link of vaccination with the development of autism by one study that proved to be wrong by following studies and the influence of anti-vaxers has significantly increased the number of parents that choose not to vaccinate their children. Also, it has brought back previously defeated illnesses like measles and mumps. The American Association for the Advancement of Science (AAAS) is determined to advance and promote the science of vaccination. That is why the AAAS devoted several sessions of its annual meeting on how vaccines can be tested and produced faster, better and cheaper and to estimate how many vaccines are in the pipeline. There is an effort for raising funds for the establishment of a Human Vaccines Project reminiscent of the Human Genome Project so that vaccine development is accelerated and expanded to pathogens such as HIV, tuberculosis and malaria.  (The Economist, Feb 2015, pages 76-77)

 

Federal Research Funding

Two new House Representatives will craft the NIH and NSF budget for 2016.

After November elections, two new house representatives will oversee federal research spending and have already started crafting the budget for the 2016 fiscal year. Representative Tom Cole (R-OK) will head the subcommittee for the NIH budget and Representative John Culberson (R-TX) will head the panel for the NASA and the NSF budget.

Representative Cole has an academic background; as a graduate student at the university of Oklahoma, he moved to England on a Fulbright scholarship to study and write his dissertation British history, focused on the evolution of a working-class village in London’s East End. He believes that historians “have a pretty good sense of what type of research should be pursued.”

On funding issues, Cole says that he cant guarantee a healthy increase of the NIH budget and that the committee “will always be scrambling to maintain the programs we think they are important, at the expense of those of lesser importance.”   Cole is a strong supporter of the NIH’s Institutional Development Award Program which funds states like Oklahoma, his home state, which get little federal science funding. He is planning on holding numerous committee hearings in order to hear all different opinions and promote cooperation.

Representative Culberson is very excited to become the chair of the Commerce, Justice, Science (CJS) and Related Agencies appropriations subcommittee that includes NASA and NSF funding. Although he has supported NASA missions in the past, many researchers will probably disagree with his opinions on climate change, social science research and his definition on wasteful research spending. Culberson grew up in a conservative family, he has represented a conservative district in West Houston and he is a member of the Tea Party Caucus. According to his statements, in 2002 he was offered a seat on the Appropriations Committee after assuring the then-Majority Leader Tom Delay that he was going “to say no to everything except science and national defense.”  Culberson is really interested in astronomy and he vows to support NASA’s priorities missions, especially the trip to collect and return samples from Mars. On the other hand, researchers of climate change are likely to have a hard time getting funded since he cites “scientific evidence of dramatically higher temperatures that are completely unrelated to human activity.”  On NSF’s funding, Culberson rejects specific grants that have been recently targeted by conservatives by stating that NSF should “avoid funding studies like shrimps on a treadmill or alcoholism among prostitutes in Thailand.”   (Jeffrey Mervis, Science)

 

 

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March 1, 2015 at 1:11 pm

Science Policy Around the Web – February 25, 2015

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By: Kaitlyn Morabito

photo credit: Self II via photopin (license)

Forensics – DNA and Crime

Building face and a case on DNA

Although it may seem like a plot line from a prime-time crime drama, police are using DNA to generate sketches of suspects in crimes which lack eyewitnesses or photographic evidence, but in which the perpetrator leaves behind DNA. This technique, called forensic DNA phenoytping, involves using DNA to determine suspect characteristics including eye and hair color. Experts hope that as the technology evolves, they will also be able to predict skin color and whether they have freckles as well traits relating to hair (baldness, curliness), tooth shape and age. In addition to generating sketches, law enforcement may be soon able to use this technology to compare mug shots in their database to the DNA sketch. While forensic DNA phenotyping may not generate an exact likeness to the suspect, it may also be useful in ruling out suspects who do not match the phenotype. Police have already released a DNA phenotyping sketch to the public in a case in South Carolina involving the murder of a mother and daughter where there were no cameras or eyewitnesses. Opponents worry about accuracy, arguing that it may encourage racial profiling. (Andrew Pollack, The New York Times)

 

Peer Review

Nature to let potential authors try double-blind date

In an effort to reduce prejudice in the peer review process, Nature and its associated journals are adding double-blind review as an option when submitting papers. As opposed to the traditional single-blind peer review currently used by most journals where only the reviewers are anonymous, in the double blind scenario, both the authors and the reviewers are redacted. With the traditional system, there have been concerns about bias, both conscious and unconscious, which may unfairly impact women, minorities, and authors from lesser-known institutions. Nature piloted this system in two of their journals, Nature Climate Change and Nature Geoscience, and had enough success to expand this option to their other publications. However, they note that this is an on-going process and will evaluate how different fields respond to the double-blind option. Blinding the reviewers from the authors doesn’t guarantee anonymity; instead it may lead to the reviewers trying to guess the author which may be easier in smaller fields. This action by Nature is just one of many strategies aimed at evening out the playing field in the peer review process. Some journals are taking the opposite route and making the process more transparent by identifying the reviewers or utilizing and open review where comments are available along with the paper. (Dalmeet Singh Chawla, ScienceInsider)

 

Regulatory Science

FTC fines marketers of two apps that claim to detect melanoma

Recently, Health Discovery Corp, and New Consumer Solutions, developers of the apps, Mole Detective and MelApp, respectively, were fined by the Federal Trade Commission (FTC). These apps claimed to be able to detect melanoma by submission of photos taken by one’s phone. The app would give users ratings of high, medium or low of the likelihood that the moles in the pictures were melanoma. Despite warnings on the app that users should see a doctor for a real diagnosis, the FTC determined that these apps misrepresented themselves as valid methods of melanoma detection.   Both companies have reached settlements with the FTC with fines ranging from about $4000-$20,000. Accuracy of these apps is a real concern, and a trained dermatologist should determine real diagnosis. A study in JAMA looked at four melanoma apps, which were not identified and found a 30% misdiagnosis rate. Health apps fall into a gray area in terms of regulation by the US government since they are not typically considered medical devices. The FDA has recently released proposed guidelines to regulate apps which can be used as a diagnostic. (Hayley Tsukayama, The Washington Post)

 

 

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February 25, 2015 at 11:24 am

Science Policy Around the Web – February 20, 2015

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By: Nicholas Jury, Ph.D.

Photo credit: Jared Rodriguez / Truthout / Flickr

Academic Records – Privacy Regulation

Open records laws becoming vehicle for harassing academic researchers, report warns

In this digital age of communication where almost every public document is stored on a server, it is much easier for information to be disseminated to the public concerning academic research. However, a recent report entitled, “Freedom to Bully: How Laws Intended to Free Information are Used to Harass Researchers”, by the Union of Concerned Scientists (UCS) states that these same public records that are protected by open records laws to promote transparency are being used as a weapon by activists and lobbying firms to harass academic researchers with whom they disagree. The report specifically identifies discrepancies in how states may need to revise some of the laws that are used to promote transparency, while balancing the rights of privacy and academic freedom in responding to requests for information.

Journalists and activists have typically used these laws, most notably, the Freedom of Information Act (FOIA), to request documents that could expose mismanagement and financial conflicts of interest. However, some groups have requested these documents in an effort to discredit the research often including water and air pollution, climate change, genetically modified organisms, and gun violence.

A few recent attempts include a request by former Virginia Attorney General Ken Cuccinelli, a climate change denier, to obtain documents from the University of Virginia for research conducted by Michael Mann. However, Michael Halpern, a program manager with the USC says, “If lawmakers, universities, and researchers develop a shared understanding of what they should disclose and a system for proactively doing so, they can avoid costly and time-consuming lawsuits and other battles.   And that, in turn, will allow researchers to get back to what they are supposed to be doing: learning more about our world.”   Source: Puneet Kollipara (Science Insider)

 

Source: Val Altounian, Science

Source: Val Altounian, Science

Public Health – Ebola

Rapid test for Ebola now available

According to the World Health Organization (WHO), it has just approved a new rapid diagnostic test for the detection of the Ebola virus. The test is particularly useful in areas that are remote without electricity and far away from a well-equipped laboratory. Prior to this rapid test, the only available technology for detecting the virus was a PCR-based test that required a significant amount of blood from a needle draw. This was a slower way to test for the virus, as results could take more than a day. This new test only takes 15 minutes, and requires only a few drops of blood from a finger prick.

The new test is produced by Corgenix, a Colorado-based company that uses specific antibodies to identify specific Ebola virus protein. The total cost of each test will be roughly $15 says, Robert Garry, a disease expert at the University of Tulane in New Orleans. The WHO has determined that the kit has a success rate of 92% of identifying people that are infected with Ebola. This rapid test could assist health care workers and public health officials in determining new hotspots of Ebola outbreak.  Source: Gretchen Vogel (ScienceInsider)

Source:  Ashley Fisher / Flickr

Source: Ashley Fisher / Flickr

Federal Research Policy

A new shot at reducing research red tape

Running a research laboratory can be tough these days with very limited and highly competitive funding bids. On top of trying to maintain funding levels to keep a laboratory productive are the requirements of reporting progress to government entities. Scientists have long complained about how federal oversight can be a hindrance to their research. Perhaps it is time for some changes to make federal oversight of research better?

There is a new panel at the National Academies that is charged with determining exactly how the government is monitoring it’s nearly $40 billion per year investment. The panel considered a report that came out in 2005 that reports that some researchers spend up to 42% of their time working on reporting guidelines for federally funded research projects.

One concern is that the federal government doesn’t provide enough funding for universities to comply with new rules. Such new rules may cost universities about $4000 extra per student each year, said Arthur Bienenstock, physics professor and special assistant to the president of Stanford University. Larry Faulkner, president emeritus of the Univeristy of Texas at Austin spoke at the National Academies panel and said, “It would be a mistake to think that the only purpose of this study is to lighten the regulatory burden on universities. Regulation is required, it’s justified, and it’s needed. What we’re trying to do is guide both government and higher education to find more efficient ways to address those needs.”   Source: Jeffrey Mervis (ScienceInsider)

 

 

 

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February 20, 2015 at 8:01 pm

Science Policy Around the Web – February 17, 2015

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By: Sara Cassidy, M.S., Ph.D.

Healthcare Policy

Everyone wants a piece of the action: The nation’s largest health insurer denied entrance into California’s marketplace

When the Affordable Care Act was initiated, it encouraged states to adopt their own insurance marketplaces to promote competitive pricing. Citizens and insurers alike were skeptical. To incentivize insurers’ participation from the outset, California was one of a few states to impose a waiting period of three years on companies who did not take part on opening day. Covered California surpassed its enrollment numbers in 2014 and is on target to increase enrollment by ~29% in 2015. UnitedHealthcare wants a piece of that pie, but its request to sell insurance statewide ex post facto was recently turned away by the Covered California advisory board. Consumer advocacy groups support the move by Covered California, as they believe insurers took a big risk being first-adopters, knowing that they likely would be signing up an unequal share of sicker-than-average people. However, California’s insurance commissioner believes restricting access is bad for business since more competition would likely drive down prices for the individual. The outcome from the Covered California advisory board was a compromise: Plans will be able to apply for entrance into the statewide market in 2016 if they were newly licensed since August 2012 (when the first-adopters opted in), or are managed care plans for Medicaid. Otherwise companies can apply to offer coverage in regions of the state where less than three carriers currently offer plans. This will allow large insurers like UnitedHealthCare limited participation into the marketplace until the moratorium is over is 2017.  (Michelle Andrews, NPR; Victoria Colliver, SF Gate; www.coveredca.com)

 

Regulatory Policy

Digital health monitors avoid FDA regulation

The wearable electronic health market (FitBit, smart phone apps, and the like) is predicted to be worth 11.6 billion dollars by 2020. Sustained lobbying by Apple, Intel and other digital health monitor companies has successfully persuaded the Food and Drug Administration to stay out of their business. Recently, the FDA agreed not to regulate technologies that receive, transmit, store, or display data from medical devices, and most mobile medication applications. However the industry and some members of Congress want more than promises; they want laws that assure the industry it can innovate and sell its products without government interference. For apps that monitor exercise routines and count calories, FDA regulation seems an over-reach, but what about apps that allow diabetics to plug glucometers into their smartphones to track insulin levels, or apps that take electrocardiograms to record cardiac events? These already exist, and sound like the types of medical devices the FDA would normally regulate to ensure safety and accuracy. And, as the market expands, it is easy to imagine it becoming increasingly difficult for patients and physicians to evaluate the quality and utility of these devices. As we enter the era of precision medicine, the mobile health market is posed to play a major role in personalized healthcare, but that position could be compromised without FDA oversight.  (Ashley Gold, Politico; Cortez et al (2014) NEJM 371:372-379; FDA)

 

Energy Policy

Republicans sign Keystone Pipeline Bill, Obama expected to veto

Speaker John Boehner (R-Ohio) staged a signing ceremony for a bill including plans to build the Keystone XL pipeline Friday the 13th, but the legislation won’t be forwarded to the White House until after the holiday weekend. President Obama is expected to veto the bill. The State Department has just finished collecting information on whether the project is in the nation’s best interest, and once Secretary of State John Kerry finishes reviewing the comments, they will be sent to Obama who will make the final decision. Opponents of the pipeline are optimistic Obama will reject the project, based on his recent negative comments. “It’s very good for Canadian oil companies, and it’s good for the Canadian oil industry but it’s not going to be a huge benefit to U.S. consumers, it’s not even going to be a nominal benefit to U.S. consumers,” Obama said in December. Despite this, the pipeline developer, TransCanada, has vowed not to give up on the project if Obama rejects the bill.  (Laura Barron-Lopez, The Hill)

 

 

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February 17, 2015 at 11:24 am

Science Policy Around the Web – February 13, 2015

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By: Julia Shaw, Ph.D

Climate Change – Geoengineering

Elite science panel calls on U.S. to study climate modification

A panel of experts selected by the National Research Council of the U.S. National Academy of Sciences recently released a report recommending government-sponsored research on the “risks and benefits” of geoengineering to alter albedo. “Albedo” in this context relates to how much light the Earth reflects back into space and albedo modification is one potential approach to counteracting the effects of global warming. Marcia McNutt, editor-in-chief of Science, former director of the U.S. Geological Survey, and chair of the committee stressed that the recommendation reflects a harsh reality and the need for action: “That scientists are even considering technological interventions should be a wake-up call that we need to do more now to reduce emissions, which is the most effective, least risky way to combat climate change.” The report supports “small-scale field experiments” provided an appropriate entity governing geoengineering research and the surrounding ethical issues is established and recommends researchers design studies to simultaneously improve basic knowledge of climate regulation. Some of the albedo experiments could include the injection of large volumes of sulfate particles into the atmosphere and marine cloud whitening through the introduction of salt particles into coastal cloud belts. A separate report released by the National Research Council addressed the topic of carbon dioxide removal, a much less controversial tactic for moderating the effects of climate change. However technological and financial hurdles continue to beleaguer removal approaches. (Chris Mooney, The Washington Post)

GMOs

Agricultural researchers rattled by demands from group opposed to GM foods

Last month U.S. Right to Know (USRTK), a nonprofit opposed to genetically modified (GM) food targeted at least four universities with freedom of information requests asking administrative officials to give them all correspondence between certain researchers and specific companies associated with GM-produced foods, including Monsanto, Syngenta, DuPont, Dow and public relations firms Fleishman-Hillard and Ogilvy & Mather. The researchers involved had all written articles for GMO Answers, a website supported by food and biotechnology firms. According to Gary Ruskin, Executive Director of USRTK the goal of the correspondence search is “ to learn how these faculty members have been appropriated into the PR machine for the chemical-agro industry.” Although Kevin Folta, a researcher at the University of Florida, Gainesville, is willing hand over his records, he is wary of USRTK’s intentions saying, “They’ll report, ‘Kevin Folta had 200 e-mails with Monsanto and Syngenta’ as a way to smear me.’” Many researchers are waiting for the final say from university lawyers before responding to USRTK’s requests. Although USRTK contends their requests are only meant to increase transparency, some researchers are concerned about repercussions on academic freedom. As another targeted researcher, Alison Van Eenennaam of the University of California, Davis, put it, “Your first inclination . . . is to stop talking about the subject. But that’s what they want. And I don’t want to be intimidated.” (Keith Kloor, ScienceInsider)

Health and the Environment

In Nevada, a Controversy in the Wind

Two geoscientists from the University of Nevada, Las Vegas, Brenda Buck and Rodney Metcalf, together with Francine Baumann, an epidemiologist from the University of Hawaii are raising concerns about the effect of naturally occurring asbestos on cancer incidence in Nevada. Historically, naturally occurring veins of asbestos were actively mined; however the health risks of such activity are now more fully appreciated. Asbestos fibers can be easily inhaled and will lodge in the lungs, causing inflammation that can lead to mesothelioma and other respiratory diseases over time. Buck and Metcalf previously published research identifying numerous asbestos deposits in the state and the presence of potentially harmful asbestos fibers near Boulder City, eastern Henderson, and Las Vegas possibly caused by natural erosion and commercial development in the area. More recently they teamed-up with Dr. Baumann who used data from Nevada’s cancer registry to draft a preliminary report in 2012 noting an unusually high number of mesothelioma cases in younger residents and women in the aforementioned areas, which suggested exposure to asbestos at an early age. The response from the Nevada Department of Health was unequivocal. The department revoked Dr. Baumann’s access to the state cancer registry and forced her to remove an abstract and cancel a pending presentation on their findings for the Geological Society of America’s national meeting upon threat of legal action. Department officials maintain that their own analysis found no significant asbestos risks and further contend that “Dr. Baumann gave too much weight to a few anomalous cancer cases.” Nonetheless the Nevada Department of Transportation delayed plans for a highway project through Boulder City and the health department recently increased its monitoring of airborne fibers in southern Nevada. Determined to publish what they saw as an important health concern, Dr. Baumann and her colleagues instead evaluated cancer data reported to the Centers for Disease Control and Prevention. On Tuesday their study, which reported elevated rates of mesothelioma in adults under age 55 and increased disease rates in women, all found in southern Nevada and all potentially linked to exposure to naturally-occurring asbestos, was published in the Journal of Thoracic Oncology. Rather than run from controversy, Dr. Baumann believes that “with public health research, the important thing is getting information into the open and then discussing it.”   (Deborah Blum, The New York Times)

 

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February 13, 2015 at 9:00 am

Science Policy Around the Web – February 10, 2015

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By: Agila Somasundaram, Ph.D.

photo credit: ynse via photopin cc

Precision Medicine

The Problem with Precision Medicine

President Obama unveiled the Precision Medicine Initiative last week. Precision medicine, i.e. personalized, genetics-based medical treatments, would deliver “the right treatments at the right time, every time, to the right person.” But is the science ready for it? DNA testing is increasingly used to detect and treat various diseases, including cancer and birth defects, and the cost of genetic analyses has dropped significantly. But many doctors are not qualified enough to correctly interpret the data, make the right connections between DNA and disease, and successfully communicate it to their patients. Incorrect diagnoses based on genetic data are common. Children have been mistakenly diagnosed with serious syndromes. Sometimes mistakes can cause greater harm than just increasing anxiety of patients or their loved ones. In 2012, The Cancer Journal described the case of a woman who underwent major surgery because her genetic-test results were not interpreted correctly. There is a paucity of genetic expertise among physicians, partly because most of the currently practicing physicians went to medical school before the human genome was sequenced, when only a handful of genes had been identified/associated with diseases. “It’s very complicated, especially for generalists, who have a million other things on their minds besides genetics,” says Mary Norton, a clinical geneticist at the University of California, San Francisco. Doctors could seek help from specialists, but there is a dearth of trained medical geneticists, so doctors end up receiving instructions from companies that are pushing their products without adequate proof of their efficacy. A survey published in the journal Genetics in Medicine reported that a majority of the participants do not fully understand genetic test results or devote sufficient time to discuss outcomes with patients. MedSeq, launched by Robert Green, a medical geneticist at Brigham and Women’s Hospital and Harvard Medical School, is an example of an initiative that educates physicians about genetic testing. Martin Solomon, a MedSeq participant and a physician at Brigham and Women’s, says genetics is simply a new tool with a learning curve, like the electrocardiogram. But Mary Norton does not think that it is that simple. Given the pace of genetics research, the variability of test methods and results, and the companies’ marketing strategies, she says that though “over time everyone will come to have a better understanding of genetics… It will probably be a bit worse before it gets better.” (Cynthia Graber, The New Yorker)

 

Vaccines

Psychological Biases Play A Part In Vaccination Decisions

Why do some people choose not to vaccinate their children? The recent outbreak of measles in the US has triggered discussions around this topic. Misinformation is one reason – people’s belief that there is a link between vaccines and autism. But what might be the psychological biases that contribute to parents not willing to ‘intervene’ on their kids? Omission bias might be playing a role here, where parents judge vaccination (an action) as more harmful to their kids than failing to vaccinate (an omission) even if the risks associated with vaccination are lower than that from not vaccinating their children. People also exhibit this omission bias to varying degrees. A study published in the journal Medical Decision Making in 1994 showed that parents who objected to vaccinating their kids were more likely to think that vaccinating was more dangerous than not vaccinating their kids. Participants were asked if they would vaccinate their child under 3, in a hypothetical situation, if 10 out of 10,000 kids not vaccinated will die from the flu, while vaccination could have a fatal side effect on 5 out of 10,000 children. If a straight assessment of risk is done, parents should have opted to vaccinate their kids. But the study showed that parents who did not believe in vaccination had a lower mean ‘tolerable risk’ than parents who did not object to the vaccine. In other words, they would vaccinate their children only if the hypothetical vaccine had a risk of 2.4 deaths per 10,000 (even though the risk from the flu itself is 10 in 10,000), while the parents who were not opposed to vaccinating their kids had a mean tolerable risk of 5.4 deaths per 10,000. To vaccinate their children, both sets of parents needed a higher risk from the disease than from the vaccine itself, but the gap was greater for the non-vaccinators. One reason could be that the non-vaccinators did not wish to ‘intervene with nature.’ Another reason could be causal responsibility for a death resulting from an action (vaccination) versus an omission (failure to vaccinate). And lastly, a related reason could be anticipated regret – parents who feel they would be causally responsible for negative consequences of vaccination also anticipate feeling greater regret about having vaccinated their children if something went wrong. But how do we define ‘act’ and ‘omission’? The author concludes that merely educating people about the benefits of vaccinations maybe insufficient to change peoples’ attitudes. However, in a society where vaccination is the norm, and not vaccinating the exemption, interpreting failure to vaccinate as the deliberate ‘act’ could have some positive effects. (Tania Lombrozo, Psychology professor at the University of California, Berkeley, NPR)

 

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February 10, 2015 at 11:12 am

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