Science Policy For All

Because science policy affects everyone.

Science Policy Around the Web – July 10, 2018

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By: Liu-Ya Tang, PhD


source: pixabay

Public health

Chronic pain patients, overlooked in opioid crisis, getting new attention from top at FDA

The opioid crisis has become a big problem in the United States, with more than 40,000 deaths from opioid overdoses a year. To resolve this issue, opioid production was reduced by 25 percent in 2016 and by an additional 20 percent in 2017 aiming to prevent the over-prescription of opioids. However, cancer patients who need it for pain control may suffer due to the shortage of this medication. Moreover, cancer patients face stigma for using opioids as a pain reliever from both health care providers and society in general.

Sara Ray and Kathleen Hoffman, who work for a health-oriented social network called Inspire, reviewed 140 public posts, written by cancer patients and their caregivers. These people expressed problems with getting the medications they need. One prominent issue is that some doctors are reluctant to prescribe opioids due to the possibility of addiction, which has made cancer patients feel like drug seekers. There is also an overwhelming amount of information about addiction and drug dependence from the media, the government, and even health care providers, which can cause confusion and misunderstanding among cancer patients and their caregivers. As a result, some patients would rather tolerate the pain than risk addiction. Some patients commented that not all oncologists are knowledgeable about treating cancer-related pain, and that cancer patients should seek help from health care providers who specialize in pain management.

Ensuring that every cancer patient has equal access to such health care, pain management awareness, as well as increased availability of pain medication are important. Both health care providers and patients need better education on pain management, which could help counteract the current stigma and remove the barriers on legitimate use of opioids for cancer patients.

(Jayne O’Donnell and Josephine Chu, USA Today)

Research progress

There’s no limit to longevity, says study that revives human lifespan debate

The average human life span has increased steadily over the past 100 years. Life expectancy has more than doubled, from about 25 years to about 65 for men and 70 for women. This sparks the question: is there a limit to the length of human life? A recent study, published in Science, reported that there may be no limit to how long humans can live.

A research team, led by Sapienza University demographer Elisabetta Barbi, and University of Roma Tre statistician Francesco Lagona, did a statistical analysis on the survival probabilities of nearly 4,000 ‘super-elderly’ people in Italy, all aged 105 and older. They found that the risk of death seems to increase as people age before reaching age 105, while they found that the death risk flattens out after age 105, which might suggest that there is no limit to human longevity. The concept of a mortality plateau is not new, as it has been mentioned in previous studies. However, compared to previous claims, this study has a more rigid data collection process and better statistical methods.

Despite this, there are many different voices regarding this finding. Since this statistical analysis was only done in the Italian population, Jean-Marie Robine, a demographer at the French Institute of Health and Medical Research in Montpellier, suggested doing a global analysis. He notes that unpublished data from France, Japan, and Canada suggests that evidence for a mortality plateau is “not as clear cut”. Some experts question the conclusion based on biological facts of human body. Jay Olshansky, a bio-demographer at the University of Illinois at Chicago, said that some types of cells, such as neurons, cannot replicate and have their “length of life”, and irreversible cell death that comes with aging places “upper boundaries on humans”.

Though there are differing opinions on whether there is a limit to the human life span, many researchers hope to better understand the mechanisms of the mortality plateau and the process of aging, to facilitate developing interventions that slow aging.

(Elie Dolgin, Nature news)

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July 17, 2018 at 4:54 pm

Science Policy Around the Web – July 6, 2018

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By: Kelly Tomins, BSc


source: pixabay

Genetic privacy

Could DNA Testing Reunite Immigrant Families? Get the Facts.

Since the enactment of the Trump administration’s “zero tolerance” immigration policy, over 2300 children have been separated from their families at the border. The policy caused widespread outrage throughout the US, and over 400,000 people protested the policy at the “Families Belong Together” march last week. Although the policy has since been redacted, the government has shown little transparency on how they plan to reunite families. Could DNA testing be a solution?

DNA testing companies, MyHeritage and 23andMe, seem to think so. They have offered thousands of testing kits to help reunite migrant children to their families. Scientifically, these tests are very reliable, and can detect direct relations by 99.9% accuracy. However, the science is the least complicated aspect of this situation.

Consent and privacy are several of the most troubling aspects of the use of these tests. Due to medical privacy rules, children would need a designated legal guardian or representative to have their DNA tested, which is clearly a problem. In addition, adults likely cannot give informed consent, especially since they are in distressing conditions and many do not speak English. Migrants may feel pressured to have the sequencing done if they believe it is the only way to be reunited with their children. DNA sequencing reveals private information about health and paternity, and sequencing data stored in databases has been used to genetically track criminals. It is difficult to imagine that detainees would be given enough information about DNA sequencing and its’ implications to make an informed decision.

Despite these concerns, according to an unnamed federal official, DNA testing has already begun. Jennifer K. Falcon, communications director for RAICES, a nonprofit in Texas that offers free and low-cost legal services to immigrants and refugees, is extremely against DNA testing in this context. In addition to her concerns regarding consent, she argues that the government will have access to extremely personal data that could be used for future surveillance. Although 23andMe and MyHeritage have assured that the genetic data will only be used for reunification, it is unclear what will happen to the DNA samples and data afterwards.

Beyond the ethical and logistical hurdles in this case, DNA sequencing is not a quick fix. 23andMe state on their website that sample processing takes 6-8 weeks. It would also be a logistical nightmare to obtain and match DNA samples from all the detainees currently in custody, especially when matching results from two different genetic testing companies. Critics point out that registering the identity and locations of migrant parents and children would have circumvented the need for such invasive testing. Although genetic tests are cheaper and more accessible than ever, they require unique consideration to address issues of privacy and consent.

(Maya Wei-Haas, National Geographic)

Endangered species

Rhino Embryos Made in Lab to Save Nearly Extinct Subspecies

Thousands of northern white rhinos once inhabited the grasslands of east and central Africa, but habitat loss and poaching led to the population’s swift demise. All hope for the survival of the rhino subspecies seemed lost when the its’ last remaining male, Sudan, died earlier this year.  There are now only two surviving individuals of the subspecies, a mother-daughter pair named Najin and Fatu, both of whom are infertile. Remarkably, a new breakthrough in reproductive technology has reignited the possibility of saving this subspecies.

In a recent study published in Nature Communications, Dr. Thomas Hildebrant, a wildlife reproductive biologist, and his team show for the first time that rhino embryos can be created using in vitro fertilization (IVF). Although there are no remaining living males of the subspecies, there are four samples of frozen sperm that could potentially be used for reproduction. The research group created four hybrid embryos by combining frozen northern white rhino sperm and eggs from southern white rhinos. The scientists plan on implanting these hybrid embryos into surrogates, to see if they survive to birth. If that is successful, the scientists aim to extract eggs from the remaining female northern white rhinos and create pure-blood northern white rhinos in the lab.

Since there is a limited supply of northern white rhino gametes (only four sperm samples and two egg samples), Hildebrant and his team are also pursuing a technology called induced pluripotent stem cells (iPSC). iPSC are a type of stem cell that can be created from adult cells, such as skin or blood. These iPSC can then be reprogrammed into various cell types. iPSC have already been created from northern white rhinos, and scientists are now figuring out how to convert them to sperm and eggs. Since the San Diego zoo has skin cells from 12 northern white rhinos, the future conversion of these cells into gametes could provide more genetic diversity to any future population.

While many conservation scientists applaud the use of technology to save the subspecies, many wonder whether the resources should rather be spent protecting habitats for remaining rhinos on-the-ground. In a study in Nature Ecology and Evolution, scientists show that de-extinction efforts can lead to a net biodiversity loss, since resources could be spent on endangered species. As Dr. Bennett, a conservation scientist at Carleton University, puts it “if the person is couching de-extinction in terms of conservation, then she or he needs to have a very sober look at what one could do with those millions of dollars with living species — there’s already plenty to do.”

(Steph Yin, New York Times)

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July 6, 2018 at 3:11 pm

The Threat of Stereotype Threat in STEM: How do we address it?

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By: Patrick Wright, Ph.D


source: Eryk via wikimedia CC-BY-SA-4.0

Stereotype threat (ST) was first described by Claude Steele and Joshua Aronson in 1995 and is defined as the risk of confirming and fulfilling a negative stereotype about one’s group and the subsequent potential impact on performance that can result. In their initial study, Steele and Aronson describe the apparent equalization of performance on a verbal exam between African American and Caucasian students in an exam after stating the exam was a tool for studying problem solving (to better understand the “psychological factors involved in solving verbal problems), and thus making no reference to ability, compared to conditions in which ability was made salient to participants (“genuine test of your verbal abilities and limitations so that we might better understand the factors involved in both”). Steele and Aronson argued that priming the African American group of race-based performance stereotypes alone was sufficient to impair their performance. In the decades since this original study, substantial work has been done to characterize this seemingly profound driver of performance and achievement disparities, especially as they pertain to science, technology, engineering, and medicine (STEM) education and careers. However, the application of these findings (both those supporting the existence of ST or calling it into question) into tangible, meaningful changes to guide future research and policy implementation has been uneven at best. What role does ST play in STEM itself, and how can we move constructively into the future to address the broader blight of stereotyping and bias in the sciences?

ST experienced by and biases against minority groups can have a substantial effect across all cogs of the scientific process, from professional progression to publishing. Underrepresentation of minority and female professors is driven predominantly by marginalization in STEM fields. For example, women make up around 50% of faculty in non-STEM fields, whereas they only account for 24% of faculty in STEM fields. African-American faculty make up only approximately 1.5% of faculty in chemistry, biology, and economics, but around 9% of faculty in English, sociology, and educational leadership/policy. Once in a faculty position, however, the problems can continue. A recent study by Magali and colleagues on junior faculty (n=174: n=108 women, n=66 men) at the Stanford School of Medicine using novel ST measures showed that women reported greater susceptibility to ST than men across all items including ST vulnerability (p < 0.001); rejection sensitivity (p = 0.001); gender identification (p < 0.001); perceptions of relative potential (p = 0.048); and, sense of belonging (p = 0.049). Women also reported lower beliefs in advancement (p=0.021). An example statement and Likert scale used to test ST vulnerability includes “I feel that people in academic medicine judge me negatively because of what they think of (my gender) as a group”; 1=strongly disagree, 7=strongly agree). Similarly, for Career Advancement: “I can see myself completing enough research to advance to Associate Professor”; 1= strongly disagree, 7=strongly agree). Finally, when it comes to scientific publishing, Budden et al. showed that after the journal Behavioral Ecology introduced double-blind peer review, there was a significant increase (7.9%, p=0.01) in the proportion of papers with a female first author and a corresponding decrease in papers with a male first author over a four year period, whereas similar journals in the field without blinded review showed not differences in gender representation across the same time period.

ST can even have a profound effect on day to day personal interactions. A recent investigation used an Electronically Activated Recorder (EAR), worn by participants, that records nearby audio for 30 seconds every 12 minutes, as an unobtrusive sampling technique of daily interpersonal interactions. Male and female scientists wore the recorders while at work. Researchers found that when male and female scientists were not talking about work, women reported feeling more engaged, compared to having feelings of disengagement and sounding less competent when talking about work. This behavior was not observed during similar conversations with female colleagues. Toni Schmader, a psychologist at the University of British Columbia and a lead investigator on the study, noted “For a female scientist, particularly talking to a male colleague, if she thinks it’s possible he might hold this stereotype, a piece of her mind is spent monitoring the conversation and monitoring what it is she is saying, and wondering whether or not she is saying the right thing, and wondering whether or not she sounding competent, and wondering whether or not she is confirming the stereotype. By merely worrying about that more, one ends up sounding more incompetent.”

Despite the extensive data outlining the damaging effects of stereotype threat, many scientists and studies question the experimental approaches of these ST studies and the interpretation of their results. Lee Jussim, Professor of Social Psychology at Rutgers University, has noted concerns about the analysis of covariance (ANCOVA) approach that was used in the initial, seminal Steele and Aronson study to compare the performance of both the African American and Caucasian groups , specifically calling into question the use of prior SAT scores as a covariate to adjust the performance scores of both groups. While their covariate-adjusted scores are statistically equivalent, there is little meaning when pre-existing differences are still intact without this adjustment; the seeming primary driving force behind these groupwise differences was entirely controlled for when prior SAT scores were selected as a covariate. Similarly, a meta-analysis on the effects of ST on girls in stereotyped domains, reported that publication bias may be underlying the ostensible effect of ST as it pertains to women’s math performance. Many of these ST studies also have small effect sizes, are underpowered, and are not robust nor replicable.

Despite the ongoing dialogue over the validity of the ST field, progress has been made to implement policies to minimize gender and racial biases and stereotypes across academic and industry settings. Daisy Grewel, a social psychologist in the Office of Diversity and Leadership at Stanford University School of Medicine, has proposed three steps that individuals can use to buffer their own susceptibility to negative stereotypes: adopting a growth mindset, educating themselves and others about the science of stereotypes and how stereotypes affect decision-making, and expanding their professional networks to increase a sense of belonging. National Academy of Sciences released a report  in 2006 called Beyond Bias and Barriers: Fulfilling the Potential of Women in Academic Science and Engineering to provide interventional strategies and guidance to academic institutions to minimize stereotyping. The document systematically addresses common stereotypes and beliefs against women in science and engineering such as “Women faculty are less productive than men” or broader stereotypes about the research “Behavioral research is qualitative; why pay attention to the data in this report?” and provides extensive evidence refuting these beliefs. The report states: “Federal funding agencies and foundations should ensure that their practices—including rules and regulations—support the full participation of women and do not reinforce a culture that fundamentally discriminates against women“ and recommends that all research funding agencies should provide workshops to minimize gender bias, and expand support for research on the efficacy of organizational programs designed to reduce gender bias. It also states that Federal agencies should establish guidelines, leverage resources, and enforce existing laws to increase the STEM talent developed in these populations. Schmader and Hall succinctly conclude in a review evaluating current polices implemented to minimize stereotypes and biases the role of policy in this realm: “Policy designed with social psychology in mind can help to recover the human potential lost from stereotype threat. However, only informed implementation can reduce the risk that policies inspire backlash from the majority or exacerbate stereotype threat among minority group members.”

The debate on the significance of ST in STEM and the broader dispute on causes of minority-related performance disparities demonstrates an increased need for research funding to allow studies to recruit larger cohorts, to maximize statistical power, enable collaboration and recruitment of biostatisticians, and pursue more appropriate analysis to give these data their appropriate due and more conclusively illustrate the weight of ST in STEM. The self-esteem, livelihood, and productive output of large groups of people are what is at stake. The questions on the existence of “stereotype threat” as it is currently known is somewhat tangential to the point; these performance disparities in STEM educational and professional settings exist, and the scientific community is attempting to put a name to a face. Despite debate regarding ST research, if these studies have catalyzed the implementation of policies at an institutional level to address implicit biases and change world views, is this not a net gain for all of us? Even if the quantifiable impact of ST does ultimately prove minimal, is it not in everyone’s best interest to implement policies to minimize stereotyping and expand perspectives regardless?

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July 5, 2018 at 1:20 pm

Science Policy Around the Web – July 3, 2018

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By: Jennifer Patterson- West, PhD


source: wikimedia commons

Women’s Health

Pregnant Women: Avoid Soft Cheeses, But Do Get These Shots

During pregnancy, expecting mothers are advised to avoid a slew of activities, foods and medications to protect their unborn child including alcohol, unpasteurized cheese, lunch meat, ibuprofen and even hot baths.  What may come as a surprise is that the American College of Obstetricians and Gynecologist (ACOG) recently released an immunization guide that advise expecting mothers on which vaccine to receive during pregnancy and which to avoid.  It also highlights vaccines that should only be given to high risk patients or immediately following birth.

The influenza vaccine is given to protect the mother who is more likely to get seriously sick if she contracts the flu. The Tdap vaccine is recommend at 27-36 weeks of gestation during each pregnancy to boost the maternal immune system in order to protect the newborn.  In addition to this recommendation, the CDC also recommends anyone who plans to come in contact with the baby receive the Tdap vaccine at least 2 weeks prior if they are not up-to-date with their vaccines.

In 2015, 20,762 cases of pertussis, the infectious agent responsible for whooping cough, were reported to the CDC by the State Health Department. Although this is a 37% decrease compared to 2014, these numbers can be further improved by improved coverage of those in contact with unvaccinated infants.

The goal of these guidelines is to further reduce the number of cases of whooping cough in babies younger then 3 months old, a time when the disease is most fatal.  For babies that contract whooping cough, half of them will end up in the hospital and some will die. Although these recommendations are not new, many expecting parents may be unaware of what vaccinations should be received during pregnancy. The CDC estimates that only half of pregnant women in the United States receive the Tdap vaccine.

(Selena Simmons-Duffin, NPR)

Drug Approvals

FDA approves Country’s first medicine made from marijuana

On June 25, the FDA announced the approval of the first drug with an active ingredient derived from marijuana.  Epidiolex is an oral solution approved for the treatment of seizures associated with  Lennox-Gastaut syndrome and Dravet syndrome.

Both are rare and severe forms of epilepsy.  Lennox-Gastaut syndrome typically presents between the ages of 3 and 5 as frequent seizures. The majority of children with the syndrome exhibit learning and intellectual disabilities and delayed motor skills.

Dravet syndrome is a rare genetic disorder that presents as frequent fever-related seizures during the first year of life.  Children with this disorder commonly have underdeveloped language and motor skills. With age, other seizure types and symptoms typically arise that are potentially life-threatening. No drug had previously been approved specifically for the treatment of Dravet syndrome, which is why FDA granted Priority Review to the application and orphan drug designation.

The approval of Epidiolex has the potential to increase the quality of life for many patients with these rare syndromes The active ingredient derived from marijuana is cannabidiol (CBD), which was shown to be effective at reducing the frequency of seizures compared to a placebo in clinical trials.  Epidiolex does not contain THC, the psychoactive component of marijuana, that causes a euphoric high.

CBD is currently classified as a Schedule I substance in accordance with the Controlled Substance Act (CSA).  Schedule I substances include drugs or chemicals with no accepted medical use and a high potential for abuse.  Although more than thirty states have passed legislation that permits the use of medical marijuana or CBD, cannabis is still categorized as a Schedule I substance under the CSA.

The approval of Epidiolex provides a path forward for the approval of other marijuana-derived medications, or treatment of additional indications, that do not conflict with federal law.  The FDA Commissioner, Dr. Scott Gottlieb, stated that “We’ll continue to support rigorous scientific research on the potential medical uses of marijuana-derived products and work with product developers who are interested in bringing patients safe and effective, high quality products.”

(Andrew Joseph, STAT News)

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July 3, 2018 at 2:19 pm

Science Policy Around the Web – June 29, 2018

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By: Patrick Wright, Ph.D



source: pixabay

Exposure Laws

Laws That Criminalize Spread of Infectious Diseases Can Increase Their Stigma

In most states, it is a crime to knowingly expose others to HIV and other infectious diseases. Many of these laws were passed in the 1980s and 1990s during the onset of the HIV era, when no effective treatments were available and fear and stigma surrounding the disease were at their highest. According to the CDC, there were 67 HIV-specific criminal laws in 33 states as of 2011. Many of these laws even turn biting or spitting, despite saliva not being a means of HIV transmission, into felony aggravated assault or attempted murder. Early in 2018, an Ohio man living with hepatitis C (HCV) reportedly spit saliva (mixed with blood) repeatedly at police and emergency medical technicians on scene to transport him to a hospital; he was sentenced to 18 months in prison last week. While it is crucial that there be laws in place to protect the public from malicious attempts at harm, it is possible these laws are contributing to stigmas already faced by individuals living with these diseases. These laws may not even by effective at stopping spread of disease. Regarding the sentenced man in Ohio, Kate Boulton, a staff attorney at the Center for HIV Law and Policy, noted “This person is now facing a year and a half of incarceration for something that didn’t harm anyone and didn’t pose a risk of harm to anyone”, emphasizing that HCV is not transmitted through saliva and requires substantial volumes of blood for there to be a transmission risk when exposed to the eye.

These exposure laws have been in a constant state of flux and revision, with some states reducing penalty and others outlining stricter and harsher approaches. In 1998, Iowa passed a law that stated individuals found guilty of knowingly exposing others to HIV faced up to 25 years in prison and had to register as sex offenders; this even applied even if safe sex practices were used and no one became infected. As a means to reduce HIV-associated stigma and reduce these punishments, advocates successfully pushed for that law to be replaced with a new one that both reduced penalties and also added hepatitis, meningococcal disease, and tuberculosis to the list of prosecutable exposure offenses so HIV was not singled out. However, this has the potentially negative effect of criminalizing exposures by people with diseases in addition to HIV. South Dakota Senate Bill No. 93 passed this year states that any person with a venereal disease (syphilis, gonorrhea, chancroid) who intentionally exposes another person to infection of that venereal disease is guilty of a Class 1 misdemeanor. It also states that any person who deliberately exposes another person to HCV infection (e.g. through blood or tissue donation, exchanging nonsterile intravenous/intramuscular drug paraphernalia) is guilty of a Class 3 felony. Just last year, California lawmakers voted to reform several criminal statues (S.B No. 239) that targeted people living with HIV. It reduced the penalty for HIV status non-disclosure from a felony charge punishable by up to eight years of imprisonment down to a misdemeanor with only six months of incarceration. Moreover, the new provisions now require an actual transmission to occur or for prosecutors to demonstrate that a defendant had intent to transmit HIV. It also recognizes that certain risk reduction measures (e.g. being on an HIV treatment regimen, safe sex practices) negate intent.

However, the negative consequences of these laws can be profound and far-reaching. Dr. Anne Spaulding, M.D., MPH is an Associate Professor in the Department of Epidemiology in the Rollins School of Public Health at Emory University noted “If you have to let people know that you are infected with HIV or hepatitis C before you have sex with them, why would anyone in their right mind get themselves tested and begin treatment?” commenting on the disclosure of disease status and possible criminal charges potentially discouraging individuals from getting tested in the first place. According to the Center for HIV Law and Policy, “HIV-related testing…can be the basis of criminal prosecution for those who are sexually active. The potential negative consequences of HIV testing at a particular time or location might inform an individual’s decision of whether or when to get tested for HIV; or whether to test anonymously or through a “confidential” testing process that reports their test results and identifying information to the state but maintains the confidentiality of those results.”. Kesler and colleagues recently estimated that 7% of their 124-person HIV at-risk cohort were less likely to get test for HIV due to concern over future prosecution, and this 7% reduction in testing could lead to an 18.5% increase in community in HIV transmission, 73% of which would be driven by the failure of undiagnosed HIV+ individuals to access treatment that would substantially reduce transmission risk. States have been unable to converge on an ideal solution to both address the criminal actions of infected individuals with malevolent intent while protecting those with no malice who are burdened with living with these diseases.

(Michelle Andrews, NPR)

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June 29, 2018 at 10:42 pm

Science Policy Around the Web – June 26, 2018

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By: Maryam Zaringhalam, PhD



source: pexels

Women in STEMM

Sexual harassment is rife in the sciences, finds landmark US study

On June 12, the National Academy of Sciences, Engineering, and Medicine released their report: Sexual Harassment of Women: Climate, Culture, and Consequences in Academic Sciences, Engineering, and Medicine. The 311-page report is the most comprehensive study on the topic, characterizing the problem of sexual harassment in academia and providing a series of evidence-based recommendations to combat harassment. The problem is pervasive in academia, with over 50 percent of women faculty and students reporting harassment, which is second only to the military’s 69 percent incidence. While sexual harassment is most often thought of as unwanted sexual advances, the report defined three classes of harassment, broadening this traditional conception: (1) gender harassment; (2) unwanted sexual attention; (3) sexual coercion. Gender harassment is the most prevalent form, which conveys the idea that women don’t belong in the workplace, for instance, by implying inferiority or telling demeaning jokes.

The report also documented the toll sexual harassment takes on academic achievement and career development, with consequences on mental and physical health that can lead to decreased participation in research and leadership, as well as leaving academia entirely. Authors of the report also have pointed out that harassment isn’t restricted to women alone, and that underrepresented minorities (including racial, ethnic, sexual, and gender minorities) have increased risk of harassment The resulting loss of talent deals a major blow to research integrity and progress in STEMM fields.

The study honed in on factors that contribute to harassment, with the largest predictor being institutional organization and environment, including a lack of understanding of the problem and potential mitigation strategies among leadership. The committee put forth a number of recommendations to address the problem. Strategies include treating sexual harassment as scientific misconduct (similar to a policy issued by the American Geophysical Union), improving transparency and accountability within institutions, and increasing diversity and inclusion through anti-harassment and civility-promotion programs.

The consensus study was prepared by the Committee on Women in Science, Engineering, and Medicine and was sponsored by NSF, NASA, NIH, NIST, NOAA, the Burroughs Wellcome Fund, the Henry Luce Foundation, and the Howard Hughes Medical Institute.

(Alexandra Witze, Nature)

Public health

What separation from parents does to children: “The effect is catastrophic”

On June 20th, the Trump administration announced the President would sign an executive order to end the controversial policy separating minors from their parents at the border. The policy had garnered a great deal of opposition from mental health professionals citing research that separation has lasting effects on child welfare and development. The American Academy of Pediatrics, the American College of Physicians, and the American Psychiatric Association had all issued statements warning of the traumatic effects of family separation. Over 13,000 mental-health professionals and 229 organizations have also signed a petition urging the administration to end the policy.

The effects of family separation have long been documented in case studies around the world—from state-run orphanages under Romanian dictator Nicolae Ceausescu’s regime to Australian aboriginal children removed from their families. The effects range from post traumatic stress disorder to lower IQ to a higher risk of addiction later in life.

Notably, the executive order has not alleviated the concerns of the professional societies that expressed concerns about the original policy. The EO maintains the “zero tolerance” policy on illegal border crossings, which will continue to place children in detention facilities. It also does not specify whether or how separated families will be reunited in the future. At least 2,342 children have been separated from their parents between May 5 and June 9, and experts note that even if children are reunited with their parents soon, the trauma will have lasting effects into the future.

(William Wan, Washington Post)


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June 26, 2018 at 4:55 pm

Science Policy Around the Web – June 15, 2018

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By: Morgan Biggs



source: Shaury Nash via Flickr (CC BY-SA 2.0)

DNA Sequencing

Rapid genome sequencing could revolutionize health care for acutely ill babies

Genetic disorders and congenital anomalies are a leading cause of morbidity and mortality in infants. Of the 14% of newborns admitted to neonatal intensive care units, those with genetic disorders are often hospitalized for a greater period of time. Maverick Coltrin, like many other newborns, suffered from an undiagnosed genetic condition. Despite receiving multiple tests and medications, Maverick’s uncontrollable seizures could not be diagnosed by doctors.

However, after his parents were given the opportunity to participate in a study that would analyze both Maverick and his parents’ DNA with a rapid whole genome sequencer, doctors were able to properly diagnose Maverick’s condition in less than two days. They discovered that the newborn suffered from Pyridoxine-Dependent Epilepsy, a form of epilepsy that could be easily treated with vitamin B6 supplements.

Similar trials using rapid whole genome sequencing (rWGS) are being conducted to determine its’ effectiveness compared to standard genetic tests. Results from a study conducted by Stephen Kingsmore, founder of the Rady Genomic Institute, revealed that rapid sequencing offered accurate diagnoses for 18 of 42 infants with suspected genetic disorders, while standard genetic tests identified a disease in only four cases. In addition to providing doctors and families with a faster and more precise diagnosis, rapid whole genome sequencing is more cost-effective. Using the rapid diagnosis method from rWGS resulted in hospital savings of $800,000 for six cases in the Rady Study. Furthermore, the cost of performing the test for all 42 families totaled $675,000, illustrating the economic feasibility of rWGS. Rapid whole genome sequencing technology could greatly benefit families by significantly decreasing hospitalization time and expense.

The implementation of rWGS technology in hospitals has additional value to doctors, as more research opportunities and hypotheses can be generated from the analysis of the collected genome data. In order for physicians and researchers to receive the greatest benefit, they would need to identify which patients could receive the most value from the rapid whole genome sequencing test. As the level of effectiveness varies from different patients, sometimes the less expensive test will suit some patients just as well as the rWGS.

Rapid whole genome sequencing is a healthcare innovation that could drastically improve the health outcomes of acutely ill infants and significantly decrease the cost of care.

(Sarah Elizabeth Richard, The Washington Post)


An outspoken epidemiologist become U.S. science envoy

Michael Osterholm, director of the Center for Infectious Disease Research and Policy (CIDRAP), has recently been selected to serve as one of five 2018 U.S. Science Envoys. Other 2018 U.S. Envoys include renowned engineers and administrators such as James Schauer, the director of the Wisconsin State Laboratory of Hygiene, and Charles Frank Bolden Jr., the former Administrator of the National Aeronautics and Space Administration.

Since its launch in 2009, the Science Envoy program has significantly enhanced relationships and improved collaboration with other countries to address issues in science and technology, as well as develop cutting edge innovations. These scientists will use their influence and expertise to better aid and develop solutions to various health and technology challenges in priority countries.

Osterholm’s qualifications as the new Science Envoy for Health Security combine expertise in infectious disease epidemiology, as well as leadership in the research, prevention, and control of infectious disease. In this position, Osterholm will focus on combating biological threats by collaborating with priority countries on infectious disease preparedness and antimicrobial stewardship. Through CIDRAP’s Antimicrobial Stewardship Project, information and educational resources will be offered to better educate communities on the appropriate use of antimicrobials, reducing microbial resistance, and decreasing the spread of multi-drug-resistant organisms.

(Jon Cohen, Science Magazine)


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June 15, 2018 at 3:36 pm