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Posts Tagged ‘precision medicine

Science Policy Around the Web – August 19, 2016

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By: Ian McWilliams, PhD

Photo source: pixabay

Climate Change

Melting ice sheet may expose cold war base, hazardous waste

During the Cold War, the US Army Corps began a top-secret mission to determine the capability of launching nuclear missiles at Russia from a base in Greenland. The military base constructed for this mission, named Camp Century, lies approximately 125 miles inland from the Greenland coast and was later abandoned in 1964 after the Joint Chiefs of Staff rejected the plans to create a nuclear base. When soldiers abandoned the base, it was thought that leftover fuel and waste material would be safely interred, buried under ice for thousands of years.

However, climate change has now threatened those plans. The increased ice melt could reveal the base as early as 2090 and it is estimated that tens of thousands of gallons of diesel fuel, wastewater, sewage, and other chemicals could be exposed. Adding to concerns is the nuclear generator housed in the frozen base. Although the base never became a site for nuclear weapons, the low-level radioactive coolant from the nuclear generator is still stored in the base. If ice melt continues to occur at an accelerated rate, some have expressed concern that these chemicals could be released into the environment by seeping into waterways causing a potential environmental catastrophe. (Stephen Feller, UPI)

Microbiome

Mouse microbe may make scientific studies harder to replicate

Reproducibility is an issue that has been the subject of much debate in the scientific community recently. Now, scientists are concerned that the microbiome may further complicate the issue. The collection of commensal microorganisms that reside on or within the body is referred to as microbiota, and it is now well known to affect the health of the host. Although researchers have taken meticulous steps to ensure that experimental animals are housed in identical conditions, including sterile bedding, strict temperature control, and standard light cycles, determining experimental variability due to differences in their microbiome have remained elusive. As researchers explore the issue further they have found that mice from different vendors have very different compositions of bacteria in their gut that could explain some inconsistencies in researchers’ experiments.

Although it is not mandated, taking steps to control for microbiome may aid in the reproducibility crisis. Segmented filamentous bacteria (SFB) have been identified as a notable concern, and some vendors are providing SFB positive or SFB negative animals separately. Although it is unlikely that SFB is the only culprit for differences in studies, researchers continue to explore new variables in rodent husbandry in an effort to improve reproducibility of scientific results. To add to the dilemma, because the species that constitute the microbiome are constantly changing, it is difficult to characterize, and impossible to standardize. Since mice share their microbes through eating each other’s feces, cage-mates can have similar microbiomes that provide natural microbiota normalization for littermates. (Kelly Servick, Science)

Precision Medicine

Spiking genomic databases with misinformation could protect patient privacy

New initiatives, like the Precision Medicine Initiative (PMI), are helping to cultivate the human genome into usable sets of data for research purposes. This pursuit is founded upon the willingness of participants to allow their genetic information to be pooled for analyses, but many have expressed concerns over the privacy of this genetic information. It has previously been shown that individuals can be identified from their anonymized genomic data and this has prompted researchers to look for additional security measures. Computer scientists Bonnier Berger and Sean Simmons have developed a new tool to help achieve this goal by using an approach called differential privacy. To increase privacy, a small amount of noise, or random variation, is added to the results of a user’s database query. Although the information returned would provide useful results, it would make it more difficult to conclusively connect this data to a patient’s identity. A similar method has been used by the US Census Bureau and the US Department of Labor for many years.

However, some scientists, including Yaniv Erlich, have concerns that adding noise to the dataset will reduce users ability to generate useful results. Erlich stated that “It’s nice on paper. But from a practical perspective I’m not sure that it can be used”. In the search for privacy, free form access to the data is limited. This “privacy budget” limits the number of questions that can be asked and excludes hundreds or thousands of locations in a genome. Additionally, because noise naturally increases error, it weakens the overall conclusion that can be drawn from the query. Simmons expects that answers will be close enough to be useful for a few targeted questions. The tradeoff for increased security is that databases protected this way could be instantly accessible and searchable, which cuts down on getting access to databases such as those managed by the National Institutes of Health. Simmons added that this method is “meant to get access to data sets that you might not have access to otherwise”. The group plans to continue to refine this method to balance the needs of researchers for access to these data sets while maintaining patient privacy. (Anna Nowogrodzki, Nature)

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August 19, 2016 at 11:08 am

Science Policy Around the Web – June 21, 2016

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By: Fabrício Kury, MD

Photo source: pixabay.com

Personalized Medicine Costs

The Paradox of Precision Medicine

Precision medicine has been hailed by President Obama as a multi-hundred-million “moonshot” meant to revolutionize medicine in a way never seen before. Its rationale derives from the recent field of research called Genome-Wide Association Studies (GWAS), which seeks to discover, in large and accelerated scale, the genetic basis of disease, novel targets for drugs, and what treatments work for which patients and at what moments and doses. This very rationale, however, can be self-limiting in a capitalist market where economics of scale is required to provide patients with access to otherwise prohibitively expensive treatments. In this lucid review, Janeen Interlandi from Scientific American demonstrates that old-fashioned, non-personalized treatments have recently been demonstrated not only be tremendously cheaper than “bespoke” drugs, but also just as clinically effective. (Janeen Interlandi, Scientific American)

Research Ethics

Scientists Are Just as Confused About the Ethics of Big-Data Research as You

Dubbed “the fourth paradigm” of science (book available for free download here), big data research poses novel ethical questions that might not be appropriately addressable by the current paradigm of ethics centered on the Common Rule and oversight by Institutional Review Boards (IRBs). A study can be ruled exempt from IRB approval if it only utilizes publicly available data – but what is it “publicly available,” exactly? In this article, Sarah Zhang from Wired magazine reviews recent cases of controversy in utilization of large datasets for studies, such as the Facebook Emotion Experiment, and suggests that IRBs might need new sets of skills to safeguard human subjects in the evolving landscape of research. (Sarah Zhang, Wired)

Data Science

The Doctor Who Wants You to Be a Research Parasite

After the editor-in-chief of the New England Journal of Medicine published in January, 2016 a stingy editorial affirming that some clinical researchers regard data scientists as “research parasites,” a wave of controversy exploded and culminated with personalities such as U.S. Chief Data Scientist DJ Patil and National Academy of Sciences President Marcia McNutt publicly using the hashtag #IAmAResearchParasite in defiance. In this article, Taylor Mayol from Ozy introduces Dr. Atul Butte, recently-appointed head of Clinical Informatics at the University of California, who sustains a bold call for more “research parasites” in health care, while additionally characterizing lack of entrepreneurship among academics as “a tragedy” because it is “the right way to truly change the world, by going beyond writing papers.” (Taylor Mayol, Ozy)

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June 21, 2016 at 9:00 am

Science Policy Around the Web – May 27, 2016

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By: Sophia Jeon, Ph.D.

Photo source: pixabay.com

Drug regulation and rare diseases

FDA delays decision on whether to approve Sarepta drug for Duchenne

The Food and Drug Administration (FDA) is wedged between a rock and a hard place to decide whether or not the agency should approve the controversial drug, eteplirsen, for Duchenne muscular dystrophy (DMD). DMD mainly affects boys and is considered a rare disease as it affects fewer than 200,000 US cases per year. As the name implies, it is a neuromuscular condition in which symptoms include frequent falling, trouble getting up or running, and learning disabilities. Average life expectancy for those afflicted with DMD is about 25, and there is no treatment. Considering these devastating factors, it is easy to understand why DMD patients, and their parents would want to hasten the approval of a drug that could potentially save their lives.

On the other hand, it is also easy to understand why the FDA is hesitant to approve this drug. The FDA is a regulatory agency and one of their missions is to evaluate drugs to determine whether or not they are safe and effective to be in the market. The issue is with a Phase III study that Sarepta Therapeutics did to test the efficacy of eteplirsen – that the trial was not well-designed making it difficult to come to a definitive conclusion that this drug works. The trial only involved 12 patients, without a placebo control group. If the FDA makes a decision to approve this drug under political pressure from various stakeholders, a drug that potentially could be ineffective for many kids with DMD only gives them and their family false hope and decreases the motivation for pharmaceutical companies to develop more effective DMD drugs.

Understanding patients’ needs, FDA has an expanded access program that, with the FDA’s approval, allows patients to try experimental drugs. In addition, the Orphan Drug Act gives pharmaceutical companies more incentive to develop drugs for rare diseases. However, it is clear that patients whose lives are on the line do not think the drug development is happening fast enough and are willing to try any option they have available. In 2015, there was even a bill introduced, called Right to Try Act that allows patients to have access to an experimental drug without the FDA’s approval. How much should public input or influence be taken into account in a drug approval process? Should FDA have better strategies in effectively communicating and engaging with patient groups? These are some good questions without definitive answers. (Ed Silverman, STATnews)

Research evaluation and bibliometrics

The pressure to publish pushes down quality

Let’s look at our current research culture. Whether or not you get an academic position, a grant, or a renewal of a grant all depends on how much you publish. “Publish or perish” is a phrase that is frequently used in academic science and it definitely rings true for many researchers in the US. People evaluate your research and productivity based on the number of your publications and the impact factor of the journals you publish in. Daniel Sarewitz recently wrote in Nature about the negative consequences of promoting this “publish or perish” culture.

The first problem is that increasingly everyone in research, whether conscious of it or not, seems to be contributing to this culture, and we need a cultural shift, which does not happen overnight. However, there are efforts to change the way we evaluate science. For instance, Declaration on Research Assessment (DORA) was initiated by the American Society for Cell Biology with a group of editors and journal publishers to try to make that cultural shift and start the movement for everyone in science to realize that merely an impact factor or how many times your paper has been cited should not and cannot accurately reflect your productivity, assess your work’s value or even define your career.

The second problem that Daniel talks more about in this article is the problem of rigor. Some researchers are so pressured to publish that they end up do things that are unethical or produce hard-to-replicate findings by experiments that are not rigorously designed. Researchers also sometimes exaggerate the importance of their findings in order to publish or hand-wave at any inconsistencies in their discussion sections. The real harm is done not only when other researchers waste time trying to chase a false lead but also when these not-rigorously-tested studies accumulate to adversely affect public health. A popular example is the study done by Andrew Wakefield who published his (false) claim linking the MMR vaccine to autism. These problems should not just stop at being “concerns,” instead it is time to re-think the strategies of evaluating science and doing science. Scientists could do better quality science by spending more time thinking and rigorously testing hypotheses than strategizing how to write an attractive story to publish more in a “high impact” journal. (Daniel Sarewitz, Nature Comments)

Clinical trial design and personalized medicine

Personalized medicine: Time for one-person trials

Biomedical research is in a very unique position right now. Recent technological advances have allowed scientists to easily and economically perform activities such as whole genome sequencing (WGS), big data analysis, mobile health data tracking and tissue and cell engineering. These technologies, especially when used in combination, can be a powerful tool that not only offers scientific insight into human biology but also brings up a number of exciting opportunities for prevention and treatment of diseases. These are a few of many reasons the President’s Precision Medicine Initiative (PMI) is gaining much attention.

With these advanced technologies, scientists are beginning to realize that personalized medicine, not just genetic counseling but one that includes a number of other measures, such as your metabolic profile, lifestyle factors, environmental exposures, etc., is the future of biomedical science. One-person trials hope to address a number of issues that the current clinical research or trial designs cannot address sufficiently such as the fact that people have different responses to drugs, and that there has been a lack of inclusion of minority or health disparities populations in many clinical trials taking place in the US. N-of-1 trials would not only address that issue but also could reduce any ethical concerns for placing patients in a randomized placebo control group especially when there is no standard-of-care, because everyone in the trial would be getting the experimental drug for a certain period of time, wait for the effects to wear off, and then a placebo for another to examine their responses to the drug. (Nicholas J. Schork, Nature Comment)

 

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May 27, 2016 at 1:30 pm

Science Policy Around the Web – November 10, 2015

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By: Daniël P. Melters, PhD.

Infectious disease

Cattle trial cuts human sleeping sickness

In addition to HIV and malaria, sleeping sickness is another serious infectious disease causing major health problems in sub-Saharan Africa, resulting in many thousands of infections each year. In total over 65 million people are at risk of infection. The disease is caused by the protozoan parasite from the genus Trypanosoma, where Trypanosoma brucei gambiense accounts for more than 98% of all reported cases. The parasite is transmitted via tsetse flies. The people most affected by this parasite live in rural areas, where they are in close contact with life-stock. These life-stock hold an important step in the life-cycle of Trypanosoma. To make matters worse, diagnosis and treatment require specifically skilled staff, resulting in only about 30% of all infected individuals receiving treatment following a diagnosis.

A collaboration between the University of Edinburgh (UK), Makerere University (Uganda), and the Ugandan government has tried to tackle the problem by injecting 500,000 cows with a parasite killing agent in addition to regular fumigation with insecticide to qualm the number of tsetse flies. The number of people diagnosed with sleeping sickness went down by 90%. Following this successful trial the program will be expanded to cover the whole of Uganda, including the treatment of 2.7 million cattle. (SciDev.Net)

Precision Medicine Initiative

Privacy Risks from Genomic Data-Sharing Beacons

One of the corner stones of President Obama’s Precision Medicine Initiative is the broad sharing of medical data between many scientists, albeit in a responsible manner. In their recent report, the NIH Precision Medicine Initiative Cohort Program (PMI-CP) workgroup advised the creation of a “hub-and-spoke” model that has a Coordinating Center to provide safeguards to facilitate data access, data normalization, and participant engagement. Part of this dataset is genomic data from patients. One major concern about genomic and genetic data is that this can be used to identify the donor, even when the genomic data is made anonymous early on. A recent article by Shringarpure and Bustamante in the American Journal of Human Genetics provides evidence that it is not only possible to re-identify to whom an anonymous genetic ‘beacon’ belongs to, but also identifies their relatives with just 1000 single-nucleotide polymorphisms (SNP)s. A beacon is a web server that answer allele-presence queries in a binary manner. This might pose a serious privacy-concern for potential participants in the PMI-CP. This concern is not limited to the PMI-CP either. Recently the American Association for Cancer Research (AACR) rolled out their Project GENIE where US and European research institutes will share their cancer genomes to catalyze the development of more precise cancer treatments. Nevertheless, Shringarpure and Bustamante do make several suggestions to continue to safeguard patient privacy. (American Journal of Human Genetics)

Direct-to-Consumer Genetics

Another Genetic Testing Company in Hot Water with the FDA

In November 2013, the US Food and Drug Administration (FDA) warned the direct-to-consumers health testing company 23andMe that they needed to comply with federal regulations with respect to approval for medical devices (section 201(h) of the Federal Food Drug and Cosmetics Act). 23andMe offered a saliva-based genetics test that provided participants with an ancestry-based analysis of some of genetic markers, in addition to various health-related genetic variations (SNPs). The FDA is of the opinion that the latter one required approval by them as a medical device. Seven months after their warning, the FDA received an application from 23andMe. Recently, they obtained the federal seal of approval for a few of their health-related genetic tests.

23andMe is maybe the most well known of these direct-to-consumers genetic testing companies, but they are certainly not the only ones. On November 2nd, the Louisiana-based DNA4Life Company received a similar notification from the FDA. Just like 23andMe, DNA4Life has held the position that they do not need FDA approval to sell their genetic test kit. However, the FDA maintains that the genetic test, which predicts how patients will respond to 120 of the most common medication, meets the definition of a “medical device” and requires that the company either provide evidence of FDA approval or present why they do not need approval. DNA4Life has not yet publicly responded to the FDA notification.

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November 10, 2015 at 12:00 pm

Science Policy Around the Web – June 9, 2015

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By: Cheryl Jacobs Smith, Ph.D.

Drug Policy

FDA Backs Experimental ‘Female Viagra’

Amidst previous accusations that the Food and Drug Administration (FDA) maintains a gender bias when it comes to treating sexual dysfunction, there may finally be a drug on the market intended to treat female sexual dysfunction. Flibanserin (proposed trade name: Addyi), produced by Sprout Pharmaceuticals, has been recommended for approval by the FDA. The recommendation is lauded as a victory by advocates for a female version of the blockbuster male sexual dysfunction drug, Viagra. Finally, there is a product on the market tailored to specific biological sexual dysfunction in women—but the FDA warns that it should be considered cautiously.

For years the FDA has struggled to approve female sexual dysfunction drugs in part due to lackluster effectiveness and safety issues. In a report released by the FDA from the Bone, Reproductive and Urologic Drugs Advisory Committee (BRUDAC) and the Drug Safety and Risk Management (DSaRM) Advisory Committee, individuals on the committee show interest in getting flibanserin approved; however, they are hesitant due to the interactions flibanserin has with alcohol consumption. The agencies assert that although the observed treatment benefits are significantly beneficial when compared to those individuals who took a placebo, the safety concerns outweigh the risks. Those risks include that co-consumption of flibanserin and alcohol can lead to heavy sedation, and that there are cardiovascular issues, such as syncope and hypotension, that can lead to low blood pressure and fainting. “We really know almost nothing about the actual clinical effects of using this product together with alcohol,” said Dr. Tobias Gerhard of Rutgers University. “We have some indication that there is clearly a concern from very small studies.”

Despite FDA’s caution concerning flibanserin’s drug interactions, there is still a desire to take flibanserin even to achieve the drug’s expected modest results. “I want to want my husband, it is that simple,” said Amanda Parrish, a mother of four from Nashville Tenn. “For us, flibanserin is a relationship-saving and life-changing drug.” (Matthew Perrone, Huffington Post)

Precision Medicine

NIH researchers sequence healthy volunteers’ DNA and find they aren’t so healthy after all

The National Institutes of Health (NIH) conducted a study a few years ago where they sequenced the genome of 1,000 healthy volunteers. The volunteers appeared to be free of disease as assessed by blood tests, echocardiograms, and self-reported systems. The sequencing result of these 1,000 healthy volunteers shocked the NIH team.

Many of the presumably healthy volunteers’ DNA contained mutations that made them more susceptible to certain conditions such as cancer and kidney disease. Interestingly, these some of individuals, or their family members with the same genetic background, were living with the disease mutation but did not have any clinical indication or outward sign of the disease. All of the participants in the study were adults, ranging from 45 to 65 years of age. The researchers who designed the study assert that this age range is prime to observe many signs of genetic disease, so it was interesting to observe volunteers whose diseases had not manifested despite their genetic susceptibility.

NIH researchers did contact participants about their genetic findings concerning disease and one volunteer shared the information with his sister. The sister sequenced herself and found that she shared the disease mutation that predisposed her to breast and ovarian cancer. She decided to undergo preventative surgery for ovarian cancer and during the procedure the doctors found a tumor.

Such findings are important to understand in light of DNA testing and in the wake of the 21st Century Cures Initiative that aims to put personalized medicine in the forefront of patient care. (Ariana Eunjung Char, Washington Post).

Global Science and Development

Nigeria’s new leadership raises hopes for science

On May 29, 2015, Muhammadu Buhari assumed office as the President of Nigeria. Although Nigeria is one of Africa’s most populous country with the largest economy, it publishes much fewer times than other African countries relative to the size of its economy.

Oye Ibidapo-Obe, vice-chancellor of the Federal University Ndufu-Alike Ikwo in Ebonyi State and former president of the Nigerian Academy of Science explains that Nigeria has suffered from leadership that has paid only lip service to the contribution of science to national development. The administration failed because they were not proactive in implementing a national science and innovation policy it introduced in 2012. Changes for the future of science in Nigeria could include implementing the 2012 policy and putting in place a NSF-like body to review grants and give funding. Mr. Ibidapo-Obe says, “I would like to see a country that is aware of the value of science. Our leaders know and profess that science can provide solutions to our contemporary challenges — poverty, education, good health provision, human security, clean and adequate energy, proper public infrastructure, food, climate-change adaptation, democracy and good governance. But they have not shown sufficient courage to invest massively in science and technology.” (Jackie Opara, Nature)

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June 9, 2015 at 9:00 am

Science Policy Around the Web – April 17, 2015

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By: Cheryl Jacobs Smith, Ph.D.

photo credit: MJ/TR (´・ω・) via photo pin cc

Genomics in Medicine

Personalizing Cancer Treatment With Genetic Tests Can Be Tricky

Since the New Year, President Obama, backed by National Institutes of Health Director, Dr. Francis Collins, has rejuvenated an initiative to use the human genome to make more informed medical decisions in health care. Since the completed endeavor to sequence the human genome was published in 2001, scientists and physicians have used this information to better understand the underlying complexities of human behavior, health, and disease. As a consequence, many areas in medicine use human genetic information as a diagnostic to guide treatment regimens.

More and more oncologists, or cancer doctors, are relying on genetic tests of a patients’ tumor to help guide cancer treatment. However, given the complexity of our genome coupled with our limited understanding of the millions of A, T, C, and G’s encoding our genetic information, oftentimes much of the information generated from genetic tests can be ambiguous. Researchers writing in Science Translational Medicine say there is a way to make these tests more meaningful.

One of the main issues with genetic testing of tumors is that they harbor mutations and it is unclear which mutation is the key to killing the cancer cell, thus, making a therapeutic decision difficult. In this regard, the researchers suggest not only conducting genetic tests on the cancer of the patient, but also conducting genetic tests on healthy, normal tissue of the patient. In this way, physicians and researchers can detect cancer-specific mutations as these mutations would only be present in the cancer, but not the normal, healthy tissue.

This is not to say that current genetic tests conducted on cancer are not trustworthy. They, indeed, are quite reliable at identifying mutations that are clearly linked to certain cancers. This group asserts that in those cases where this approach does not work, that additional sequencing of the normal, healthy tissue as a means of comparison may help improve the diagnostic quality of those tumors that produce ambiguous results. The future of cancer diagnostics is a booming, changing, field and much is to remain to be seen in regards to consistency of tactic used. (Richard Harris, NPR)

Federal Research Funding

Controversy awaits as House Republicans roll out long-awaited bill to revamp U.S. research policy

The America Creating Opportunities to Meaningfully Promote Excellence in Technology, Education, and Science Act of 2007, or America COMPETES Act, was signed by President Bush in 2007 and it became law on August 9, 2007. The COMPETES Act sets funding targets for select physical science agencies: the National Science Foundation (NSF), the National Institute of Standards and Technology (NIST), and two offices with the Department of Energy (DOE): the Office of Science, and the Advanced Research Projects Agency-Energy, or ARPA-E.

Authored by the panel’s chair, Representative Lamar Smith (R–TX), there are provisions to the reauthorization act that scientists are likely to find interesting.

  • NSF spending: The bill would authorize $126 million less than President Obama requested but $253 more than NSF’s current budget. It relocates NSF’s budget to the natural sciences and engineering at the expense of the geosciences and the social and behavioral sciences. To add injury to insult, additional cuts from the geosciences and the social and behavioral sciences are expected.
  • DOE R&D: At least in 2016, the bill funds most Office of Science programs but the budget remains flat in 2017. Cuts will occur in the more applied renewable energy programs and new energy technologies. Interestingly, funding will boost in the areas on fossil and nuclear energy.
  • Peer review: Since Smith became chair in 2013, this has been a major area of debate regarding how NSF reviews the 50,000 or so requests for funding it receives from scientists every year. Apparently Smith and the NSF Director, France Córdova, have agreed upon legislation that will not “[…]alter[ing] the Foundation’s intellectual merit or broader impacts criteria for evaluating grant applications.”
  • NSF’s portfolio: This section of the bill gives NSF the responsibility “to evaluate scientific research programs undertaken by [other] agencies of the federal government.” This language apparently wants NSF to judge other research agencies about how they are facilitating their research programs. This is quite an awkward and broad demand. It still remains to be seen how this will play out.
  • Large new facilities: This section of the bill tries to rein in “wasteful spending” by requiring the NSF to correct any problems identified by an independent audit on a project’s expected cost before starting construction. However, the bill also restricts spending from contingency funds “[…] to those occurrences that are foreseeable with certainty … and supported by verifiable cost data.” This is interesting language given the need of a contingency fund is to fund unexpected occurrences.
  • Administrative burden: This part of the bill supports reducing administrative oversight in the form of government oversight and regulations. The bill argues that administrative costs are high and costly and these monies could be used to fund research. Instead, the bill will have the White House science advisor convene an inter-agency panel.
  • NIST: The bill increases NIST’s budget; however, falls short of President Obama’s request.

The good news is that the COMPETES bill has finally been reauthorized. However, controversy awaits as to the effectiveness of the reauthorized bill. (Jeffrey Mervis and David Malakoff, ScienceInsider)

Climate Policy

Climate change: Embed the social sciences in climate policy

The Intergovernmental Panel on Climate Change (IPCC) needs to broaden its perspective by adding more social scientists. The organization is akin to a moth to a flame— focusing attention on a well-lit pool of the brightest climate science. But the insights that matter are not readily viewed and are far from the bright light of the debate. The IPCC has involved only a narrow slice of social-sciences disciplines: economics. The other social sciences were mostly absent. Bringing the broader social sciences into the IPCC may prove challenging, but it is achievable if they adapt a strategy that reflects how the fields are organized and which policy-relevant questions these disciplines know well. The IPCC has proved to be important. But presently, it is too narrow and must not monopolize climate assessment. In the future, reforming the organization will benefit the conversation surrounding climate change greatly and move contentious work into other forums. (David Victor, Nature)

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April 17, 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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