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Science Policy Around the Web – December 21, 2018

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By: Mohor Sengupta, Ph.D.

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Medical Detectives: The Last Hope For Families Coping With Rare Diseases

Rare diseases affect far fewer people than other diseases, and consequently many are difficult to diagnose or may even not be identified yet. Current approaches seek to identify rare diseases by examining genetic mutations at one gene at-a-time, picking the gene by roughly informed guesses based on the symptoms. This method may soon be a thing of the past, thanks to Undiagnosed Diseases Network (UDN). UDN is a research study on a never-ending scale. It collects genomic data from persons with rare diseases and identifies the culprit mutation/s. The findings are cataloged, and doctors encountering novel symptoms in their patient can go to the UDN database and dig out the disease that matches most with the symptoms. That would give them a possible starting point. In this respect, the sole purpose of UDN is to find solutions for rare medical challenges where doctors are not able to.

UDN is made up of three components: A coordinating center based at the Department of Biomedical Informatics at Harvard Medical School, twelve clinical sites in the USA, including the NIH Undiagnosed Disease Program at Bethesda and core facilities. UDN is backed by the National Institutes of Health Common Fund that seeks to provide answers for patients and families affected by mysterious conditions.

There are more than 6000 known rare diseases, and combined these affect fewer than 200,000 Americans at a given time. Eighty percent of all known rare diseases are genetic in origin and half of all rare diseases affect children. Symptoms of a single rare disease may vary from patient to patient, and the disease itself is often masked by common symptoms. This confounds appropriate diagnosis of a rare disease greatly. For many rare diseases there is no knowledge of the underlying cause and information of disease progression is limited. Without the correct intervention, patients and their families experience a decline in the quality of life over time.

Research on rare diseases need to be collaborative across nations, and a global network of physicians and researchers is needed to facilitate knowledge sharing about these diseases. There needs to be a comprehensive approach in the understanding of rare diseases, analogous to virtual knowledge bases like the UDN database and Orphanet. Happily, progress is being made in this direction. Several countries have appropriate policies in place, and there are organizations that are the voice of patients with rare diseases, such as ERORDIS in the EU, the National Organization for Rare Disorders in USA and the Organization for Rare Diseases in India. It is imperative that these cohorts have greater interaction and knowledge sharing among one another.

Finally, public awareness is crucial. The patient community plays a crucial role in addressing awareness. They form the voice of the rare disease community and the starting point for development of policies. Rare Disease Day was created by EURORDIS in 2008, and February 28th, the rarest day, was chosen to mark our combat against rare diseases and our support for those living with it. On its tenth anniversary last year, 94 countries and regions from every corner on the globe commemorated the day, and 2018 saw the addition of five more countries into the group.

As a person afflicted with a rare disease myself, I would say, we may be only a few but with your support, we have the best shot at it!

(Original article by Lesley McClurg covers UDN, NPR)

 

Will We Survive Climate Change?

 

The holidays are upon us and many will head out to different directions outside the city. Writing the last blog for this year, I thought we could ponder over some rather worrying issues and offer solace to one another.

It’s December and today is winter solstice. The day with the longest night arrived amidst torrential rains. Each year we are seeing more storms than the last. Hurricanes like Florence and Mangkhut have rocked the world with damage and destruction. The temperature on Earth is already at 1 degree Celsius above pre-industrial levels. Record number of people have experienced extreme heat wave in 2018. Countries like Canada and Japan got much warmer summers than they are used to, and July 2018 ranked as one of the hottest months in Europe. Changing wind patterns and drier climate have ravaged the state of California with wild fires. A total of 8,434 fires burnt an area of 1,890,438 acres (765,033 ha), the largest amount of burned acreage recorded in a fire season, according to the California Department of Forestry and Fire Protection and the National Interagency Fire Center, as of December 6. From June through mid-July, severe downpour in southwestern Japan caused devastating floods and mudflows, killing nearly 300 people. A month later, the southern Indian state of Kerala was slapped by an unusual monsoon, causing the worst flood in nearly a century in the state with traditionally high rainfall. It left nearly 500 people dead.

The Paris Climate Accord has set a goal of keeping global temperatures from rising more than 2 degrees above pre-industrial levels. At 2 degrees above, things are this bleak:

Icebergs in the Arctic waters are ten times more likely to vanish in the summers.

Most of the world’s coral reefs are to disappear.

37 percent of all people on Earth are to experience extreme heat waves.

411 million people are to experience severe urban draught.

80 million people will be threatened by rising sea levels.

However, at 0.5 degrees Celsius lower, many of these situations seem slightly less devastating. Arctic ocean ice is more likely to survive the summers. Coral reefs will not be wiped out completely. 14 percent of people will be exposed to extreme heat waves and 20 million will be exposed to urban drought.

Seems slightly better? Yet, no industrialized nation is expected to meet the 2 degrees goal, let alone the 1.5 degrees mark, as per their current consumption of fossil fuels. The effects of today’s atmospheric carbon dioxide will be felt by generations to come.

Enough of grim talk. As stated in John Schwartz’s article, “there is no scientific support for inevitable doom”.

Reducing the amount of greenhouse emissions could address the most troubling issues of global warming. Many countries are making efforts to rely on renewable, cleaner energy sources like solar energy. There are increased efforts to use public transportation in some countries. Cars run by electricity are trending. The world is changing. Only not as fast as we want it to.

Let us resolve to consciously cut down on fossil fuel consumption in 2019. No one way is the perfect solution for this self-created menace and not everyone will be touched by this problem in the same manner. But collective awareness and efforts can go down a log way for everyone and for the Earth.

(John Schwartz, New York Times)

 

 

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December 21, 2018 at 11:20 am

Vaccination Politics: Exploring the policy measures needed to lower the risk of vaccine-preventable disease outbreaks

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By: Allison Cross, Ph.D.

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Source: Wikimedia

Thanks to modern medicine, many of the diseases that plagued our ancestors can now be prevented by vaccination.  Although there are no federal vaccination laws in the US, there are state laws making vaccination mandatory for children attending public schools. All 50 states require public school children to be vaccinated against diphtheria, tetanus, pertussis, polio, measles, rubella, and varicella (chicken pox). There are exceptions to these requirements, however, with all states allowing medical exceptions, 47 states allowing religious exemptions, and 17 states allowing personal belief exemptions.  A recent study published in PLOS medicine found that in states that allow personal belief exemptions, the rates of these exceptions has increased two-thirds in the last decade.  The study warns that numerous states and large metropolitan centers that have shown increases in non-medical exceptions (NMEs) may become increasingly vulnerable to outbreaks of vaccine-preventable disease.  This raises the question of whether policy measures should be taken to increase rates of vaccination.

Many parents who apply for personal belief exemptions for vaccinations do so because of concerns of vaccine safety and efficacy. The most influential milestone of the current anti-vaccination movement came in 1998 with an article published by Dr. A Wakefield in the Lancet linking the MMR vaccine to autism; the story was later featured on 60 minutes. Dr. Wakefield’s research has since been debunked, his paper has been retracted from the Lancet, and he was stripped of his medical license. Despite this, many parents remain fearful of vaccination and these fears continue to be fueled by the media, celebrities, and politicians.  While safety concerns keeps some parents from vaccinating their children, others choose not to vaccinate because they believe their children have a low risk of contracting vaccine preventable diseases due to their low prevalence.  Still others hold beliefs that natural immunity is better than vaccine acquired immunity.  In addition to personal beliefs against vaccination, some individuals oppose vaccination on the basis of their religious beliefs.

It is critical to maintain high vaccination rates among the population to provide protection to those who cannot be vaccinated or who have not yet developed immunity.This concept is known as herd immunity. There is a very small proportion of children that cannot be vaccinated due to medical reasons, but this small percentage of the population generally does not compromise herd immunity.  However, when parents refuse to vaccinate their children based on religious or personal beliefs, the percentage of unvaccinated children can rise and compromise herd immunity.   The percentage of the population that needs to be vaccinated for herd immunity to be effective depends on how contagious the germ is.  In 2017, the CDC reported that 83.4% of children from 19-35 months were vaccinated against diphtheria, tetanus and pertussis, 91.9% against polio, 91.1% against measles, mumps and rubella, and 90.6% against varicella.  Though these numbers may sound high they may not be high enough; for example the vaccination rate required to achieve herd immunity for measles is believed to be roughly 96% or higher.

Currently there are only three states that solely allow medical exemptions for school vaccination; Mississippi and West Virginia banned NMEs more than 30 years ago while California recently banned NMEs in January of 2016.  The strict rules on vaccination exemptions in Mississippi and West Virginia are linked to increased rates of vaccination.  In the 2014-2016 school year, over 99% of kindergarteners in Mississippi were reported to have received their MMR and DPT vaccines. On the contrary, states that permit both personal belief and religious exceptions are reported to have 2.5 times higher rates of vaccine exemptions.  California passed its statewide ban of NMEs after a 2015 measles outbreak that was linked to the Disneyland Resort in Anaheim, California.  Investigations into the outbreak reported that the exposed population had a vaccination rate of only 50-86%.  After passing the NME ban, California reported a record high level of vaccination with 95.6% of kindergarteners receiving all required vaccinations during 2016-2017.

Considering that the states that allow personal and religious exemptions to vaccination generally have higher levels of vaccine exemptions, one must consider whether more states should act to ban NMEs.   While these policies may increase vaccination rates, they may also come with other undesirable side-effects.  For example, although California reported a dramatic increase in vaccination rates following its ban of NMEs, a study by Mohanty S. et. al. also reported a significant increase (from 0.2% in 2015–2016 to 0.7% in 2017–2018) in medical exceptions, with the strongest increase reported in regions with high rates of personal belief exemptions prior to the NME ban.  This suggests that parents with personal beliefs against vaccination were able to find physicians willing to exercise “broader discretion” in providing medical exceptions.   Even more troubling, the study found that some physicians were charging steep fees to sign off on “medical” exceptions for parents who previously sought non-medical vaccination exemptions.  These findings suggest that the potential long-term benefit of the NME ban in California may not be achieved without further legal changes, including some form of standardized review of medical exemptions.

Though eliminating NMEs may be a successful means of raising vaccination rates to the levels needed to achieve herd immunity, other less drastic legislation changes may have similar results while respecting both the pro- and anti-vaccination viewpoints.  Some proposed alternatives include financial disincentives and stricter exception policies. Navin M.C. and Largent M.A.  proposed an “inconvenience approach”, which allows non-medical exceptions to continue but makes the application process more burdensome. Similarly, Billington J.K. and Omer. S.B. proposed the use of processing fees as a financial disincentive to discourage NMEs.  They suggest that states require annual renewal of NMEs and require a processing fee for each renewal.  They further recommend that these fees be administered in a “sliding-scale” to avoid income-based discrimination.  Billington and Omer argue that these fees will “help tilt the balance of convenience in favor of vaccination”.  Another approach could be requiring parental counseling on vaccine risks and benefits to obtain NMEs. After Washington state passed a law in 2011 requiring counseling intervention for NMEs they reported a relative 40.2% decrease in exception rates, with an absolute reduction of 2.9%.   Although elimination of NMEs is linked to higher vaccination rates, the less drastic proposals above could provide increased rates of vaccination without evoking the public backlash of eliminated NMEs entirely.

In states that allow medical and religious vaccination exemptions, policy makers attempting to crack down on religious exceptions can expect to face a lot of criticism from individuals who hold strong anti-vaccination beliefs.  In April, New Jersey lawmakers faced harsh criticism after advancing a proposal to make it harder for children to receive religious exemptions for vaccinations. New Jersey is among the 33 states that do not allow personal belief exemptions but permit both medical and religious vaccine exceptions.  Lawmakers decided to take action after noticing a dramatic increase in the number of children citing religion as a reason for refusing vaccination, from 1,641 students in the  2005-2006 school year to 10,407 children in 2016-2017. The proposed legislation would require parents to provide a notarized statement about their religious beliefs, including proof that their beliefs are ongoing, and to specifically explain how immunization conflicts with their religious tenets.  The proposed measured are intended to curb the percentage of parents who use the religious exceptions as a way to avoid vaccination due to personal beliefs or fears about vaccination.

Individuals who oppose vaccination, whether for religious or personal reasons, strongly believe that the government should not be able to force vaccination on anyone. However, childhood immunizations prevent serious illness and death along with billions of dollars of costs to society each year.  Furthermore, the choice not to vaccinate does more than effect the unvaccinated individual, as it also puts at risk those individuals who cannot receive vaccinations due to medication reason and those who have not yet developed immunity. Although rates of vaccine preventable diseases are currently very low in the US, the CDC has made it clear that maintaining high levels of vaccination is essential to prevent diseases from making a comeback. Strong anti-vaccination sediments and subpar MMR vaccination rates are being blamed for the current and ongoing measles outbreaks in Romania, France, Greece, and Italy; outbreaks across the EU have resulted in 33 deaths this year. It is clear that policies promoting vaccination are important for disease prevention but determining the best policy measures to increase vaccination rates, while considering the ethical debate of mandatory vaccination, while continue to be a struggle for policy makers.

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December 20, 2018 at 9:37 am

Science Policy Around the Web – December 18, 2018

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By: Janani Prabhakar, Ph.D.

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Source: Pixabay

How will we outsmart A.I. Liars?

Click bait, such as the new SNAP_R bot, is becoming increasingly sophisticated. Researchers at ZeroFOX, a security company in Baltimore, designed SNAP_R to fool users to click on links in tweets that could lead to hazardous sites. While this was just a proof of concept and did not actually lead users to such sites, the findings are striking about human click behavior: SNAP_R elicited a click 66% of the time, on par with hand-crafted phishing attempts. The bot was designed using neural networks that learned to write phishing messages through tweets, Reddit posts, and other online hacks. Improvements in machine learning methods will allow these types of networks to become smarter and smarter and learn from larger amounts of data that include human specific behaviors through text analyses. Thus, a more powerful network can take advantage of the nuances of human behavior to manipulate innocent users much easier. There are examples of this already in place that are not nefarious, such as Apple’s Siri or Amazon’s Alexa. These platforms use neural networks to learn and decode voice data and generate sounds as well as images in response. Another example is Google’s Duplex system,  an A.I. that can call restaurants and make reservations for you. With advances in language systems, future bots can respond in a more nuanced, almost unrecognizable (as A.I.) manner. Experts believe that with the many global advances in A.I., “we face a machine-learning arms race.” While there are many advances in these types of networks, we are still figuring out methods to detect those that are malicious. The current standard is that of individual responsibility, or the “onus is on the individual” approach. In essence, each person should view every bit of news from an online source with distrust. While at present this is the best standard, it is less easy to control and measure than algorithms that could detect pernicious machine learning algorithms. While these are currently being developed, It will be some time before they can be implemented. The problem is, undoubtedly, complex.

(Cade Metz, New York Times)

 

China orders medical team to stop gene-editing project

Late in November, Dr. He Jiankui announced that he had used CRISPR to change the genomes of twin girls born through IVF. This news made headway and received significant criticisms from universities and government organizations across the world. On November 29th, China’s government ordered a halt to this approach by the medical team, stating with a large global consensus that it was too early to make permanent changes to DNA. Gene editing holds promise for helping individuals with genetic illnesses and studies are currently underway to modify the genome using CRISPR in these individuals. However, little is known about the risks of altering DNA in eggs, sperm, or embryos. To do so outside of laboratory research has been described as a huge violation of research ethics. Currently, Dr. Jiankui plans to release all his raw data for independent verification. This research has brought to light questions about the acceptable risks in conducting research with high impact. There are standard, clear ethical guidelines that many argue Dr. Jiankui should have known he was in violation of. Recently, the journal Nature named Dr. Jiankui in its top 10 people who mattered in science in 2018 list because of the important questions about morality and ethics his work brings to the scientific arena. The topics under discussion include how researchers evaluate the ethical considerations and the policies in place that regulate those considerations – should these be re-evaluated?

 

(Marilynn Marchione, The Christian Science Monitor)

 

 

 

 

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December 18, 2018 at 4:52 pm

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Science Policy Around the Web – December 14, 2018

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By: Patrice J. Persad, Ph.D.

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Trump Administration Says Companies Can ‘Incidentally Harass’ Marine Mammals

National Oceanic and Atmospheric Administration (NOAA) Fisheries, under the Trump Administration, approved five companies’ hunt for energy resources, such as gasoline and oil, in the Atlantic Ocean. The companies will employ seismic air guns to geographically visualize reserves underwater. The Administration stated that while utilizing these techniques, companies may “incidentally, but not intentionally, harass marine mammals”.

The only items the corporate entities need to start combing underneath are permits from the Bureau of Ocean Energy Management (BOEM). The BOEM must execute environmental assessments as deemed by the National Environmental Policy Act (NEPA). After passing this check (which the BOEM confides will be soon), the quintet of companies may initiate surveying. Fortunately, some safeguards for marine species include halting operations if various species are visibly present or noted through detection of their vocalizations.

Although NOAA appears unconcerned about seismic surveying’s effects on marine species, environmental groups, such as Oceana and NRDC’s Marine Mammal Protection Project, plus a number of researchers do not want to risk these organisms’ survival to seismic air gun blasts and, potentially, offshore drilling. The Atlantic is a realm where species, particularly cetaceans, rely on echolocation, a process based on travelling sound waves, to pinpoint food, evade predators, and find each other. Thus, researchers worry about noise pollution from seismic air gun blasts and how surrounding ecosystems react, or fail to react. According to oceanographer Aaron Thode, these manmade sounds can travel beyond projected danger zones, and whales have departed areas because of sound blasts. Therefore, research on how such noises, in the long-term, influence organismal reproduction and feeding must be a priority. Even if we, as humans, bank on oil and gas at the present time to sustain, we will only last as long as the environment endures.

(Merrit Kennedy, National Public Radio)

 

China’s crackdown on genetics breaches could deter data sharing

The Chinese government is not cutting local companies and institutions any slack on unauthorized sharing, or transferring, of denizen patients’ genetic data and biological (DNA) samples. Governmental approval also applies to disclosing genetic data and other resources for journal publications. In October, five companies and organizations experienced public disgrace as a result of their failure to procure permission from the ministry of science: AstraZeneca, Kunhao Ruichong, Amoy Diagnostics, BGI, and Huashan Hospital. This outing of who encroached upon patients’ privacy was without precedent. The government bars offending entities (see the aforementioned) from contributing to international genetics consortiums. The ministry of science will expel restrictions on collaborations only when violators redeem themselves by successfully passing privacy evaluations.

The ministry of science’s constraints on genetic data release may discourage scientific engagement by the Chinese research community and citizens if the approval process lags from inefficiency. Several outside scientists, such as Drs. Arcadi Navarro and Paul Flicek, expressed sentiments emphasizing that international genomics, or genetics, projects would be uncomprehensive because of missing contributions from China. Scientific reproducibility is at stake, too, if data sets are inaccessible or lack transparency. The Chinese government demanded one 2015 Nature genetics paper to be removed from the journal website because authors did not receive permission to disclose “de-identified” sequence data for a subset comprising at least 10,000 Chinese women. The data for these individuals eventually was wiped out to oblige the ministry. Liu and colleagues, another research group, avoided conflict by disclosing summary statistics instead of raw genetic data in their 2018 Cell paper. All in all, China’s attempt to protect citizens’ privacy is commendable. However, the approval process for genetic data sharing requires improvement, especially if researchers’ discoveries for population health are both distilled and stalled from reaching the scientific community and at-risk populations.

(David Cyranoski, Nature)

 

 

 

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December 14, 2018 at 11:03 am

Science Policy Around the Web – December 11, 2018

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By: Sarah Hayes, Ph.D.

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Source: Pixabay

Guns kill more U.S. kids than cancer. This emergency room physician aims to prevent those firearm deaths

 

Emergency room physician Rebecca Cunningham responded to an NIH call for public heath proposals with a plan to build infrastructure for studying firearms injury in children. After one round of revisions, Cunningham has been awarded a five year, 4.9 million grant from NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) – the largest NIH award for firearms research in over 30 years.

This large award heralds a new beginning for research which had slowed under the weight of a 20-year-old policy restricting federal research purview. The 1996 Dickey Amendment banned the CDC from funding anything leading to gun-control advocacy. This policy indirectlysuppressed federal spending on firearms-related research across all agencies. In 2013, a mass shooting in a Connecticut elementary school spurred a presidential memorandum leading to a 300% bump in NIH funding for research related to firearms.

Progress on Cunningham’s grant will lay a foundation for firearms research in public health going forward. Almost 30 scientists from diverse institutions will work together to build capacity for firearms study beyond the five-year term of the grant. Advice will be actively sought from gun-owning stakeholders, and key research questions will be identified. Existing data bases will be organized to facilitate use in research, pilot studies will be carried out to address ways to make firearms safer, and a new wave of scientists will be trained to continue the work.

Cunningham leads with the conviction that her research is and should remain staunchly apolitical. She respects the American right to own firearms, understands that guns may be acquired for safety, and say her research is not at odds with gun ownership. Rather, she likens her work to the evidence-based progression toward mandating seat-belts in cars – a policy which reduced automobile fatalities even as the number of cars grew. Cunningham says “the person, the gun, the home environment—all are modifiable in some way or another;” and these are some of the variables we will ultimately need to understand more fully in order to reduce the number of gun fatalities in children.

 

(Meredith Wadman, Science)

 

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December 11, 2018 at 3:44 pm

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The Impact of Research Funding on Minority Health and Health Disparities

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By: Nancy Chiles Shaffer, Ph.D.

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Source: Maxpixel

Federal agencies have attempted to improve minority health and reduce health disparities since the 1980s, and these efforts have continued through today. To briefly highlight some of the progress that has been made, the Department of Health and Human Services (HHS) initially released a report in 1985, “The Secretary’s Task Force Report on Black and Minority Health (Heckler Report)”, that discussed the state of racial health disparities in the United States1. This report led to the creation of the Office of Minority Health in 19861. Subsequently, the Office of the Director of the National Institutes of Health (NIH) created the Office of Minority Programs2. This began the efforts of NIH to address minority health and health disparities. Additionally, in 1993, HHS founded the Office of Research on Minority Health, which was later reauthorized in 20101,2. The Agency for Healthcare Research and Quality (AHRQ), under the Healthcare Research and Quality Act, was directed in 1999 to monitor racial disparities in health care3.  The National Center on Minority Health and Health Disparities was founded in 2000 and later became an NIH institute in 20102. More recently, in 2011, the HHS Action Plan to End Health Disparities as well as the National Stakeholder Strategy for Achieving Health Equity were created to further reduce health disparities1. Over these 33 years, funding also has been explicitly designated to improve minority health in the United States. While only 427 grants addressing minority health and health disparities were funded in 1985, there are currently 7,958 active grants4. How have health outcomes and health care been impacted by funding for minority health and for addressing health disparities?

One of the markers of national health that can be used to examine the success of these efforts so far is life expectancy. In 1990, life expectancy at birth was 71.8 years for men and 78.8 years for women5. Race-specific life expectancy was 72.7 years and 64.5 years for White and Black men, respectively, and 79.4 years and 73.6 years for White and Black women, respectively5. These data reflect 8.2 years shorter life expectancy for Black men and 5.8 years shorter life expectancy for Black women compared to their White counterparts.  Efforts to increase life expectancy led to a 6% (4.5 years) and 3% (2.3 years) increase in life expectancy by 2015 in men and women, respectively. Additionally, the difference in life expectancy between Black and White individuals decreased by 46% (3.8 years) in men and 52% (3 years) in women.

The National Center for Health Statistics (NCHS), a division of HHS’ Centers for Disease Control and Prevention, produced two data briefs examining racial differences in life expectancy. The first report explored the causes of death related to racial differences in life expectancy in 20106. It was found that there was a Black disadvantage in death rates due to heart disease, cancer, homicide, diabetes, and perinatal conditions. The Office of Minority Health stated in a 2011 press release that the Affordable Care Act provided opportunities for “bringing down health care costs, investing in prevention and wellness, supporting improvements in primary care, and creating linkages between the traditional realm of health and social services”7. The second NCHS brief assessed how decreases in racial disparities in life expectancy in 2013 are attributable to decreases in death rates for conditions among Black people, including heart disease, cancer, HIV, unintentional injuries, and perinatal conditions8. Despite these decreases, AHRQ’s “National Healthcare Quality and Disparities Report” in 2016 stated that most racial disparities in health care still exist9.

Beyond federal funding, private organizations and philanthropic organizations have also committed to reducing health disparities. A 2009 workshop that aimed to determine factors associated with health disparities was funded by the California Endowment, Missouri Foundation for Health, Connecticut Health Foundation, United Health Foundation, and Kaiser Permanente, and the CDC7. The Merck Company Foundation in 2009 provided $15 million to fund their Alliance to Reduce Disparities in Diabetes, focusing on reducing disparities in type 2 diabetes in low-income adults, Blacks, Hispanics/Latinos, and Native Americans7. Aetna Foundation, through their Racial and Ethnic Health Care Equity program, funded a report in 2012 addressing how the Affordable Care Act could be used to “advance health equity for racial and ethnic minorities”7. A brief funded by the California Endowment, California Wellness Foundation, and the San Francisco Foundation concluded that language barriers in California inhibited enrollment in the California Health Benefit Exchange7,10. As a result, funding was provided to increase cultural and linguistic competence for health care providers. The Cigna Foundation funded a $200,000 grant in 2015 for the Health Advocates In-Reach and Research (HAIR) program at the University of Maryland School of Public Health’s Center for Healthy equity to train barbers and hair stylists on health education11.

While funding has resulted in improvements in minority health, there is still more work to be done. The Office of Minority Health states that racial and ethnic minorities “…are less likely to get the preventive care they need to stay healthy, more likely to suffer from serious illnesses such as diabetes or heart disease, and when they do get sick, are less likely to have access to quality health care”12. Many of the areas that require additional attention are the focus of several current funding initiatives. The Office of Minority Health currently has grants to address uninsured men, HIV/AIDS, Lupus, and cultural and linguistic competency13. In addition, AHRQ is currently funding research addressing health disparities among the lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community, as well as mobile technology to improve self-care for HIV/AIDS patients9. Given the improvements that have been observed thus far over the past 33 years, the ongoing continuation of funding to address minority health and health disparities has the potential to help the United States achieve health equity for all.

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December 7, 2018 at 2:41 pm

Science Policy Around the Web – December 6, 2018

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By: Neetu M. Gulati, Ph.D.

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Source:Pixabay

 

The CRISPR Baby Scandal Gets Worse by the Day

Ethical concerns and controversy came to the forefront last week when news broke that Chinese scientist He Jiankui had supposedly created genetically edited babies using CRISPR technology: a first in the world. CRISPR/Cas9 technology, or CRISPR as it is more commonly known, is a scientific tool that allows researchers to edit (add, subtract, or change) the expression of genes quickly and precisely. This technology could be used to fix mutations that cause human disease. However, there are also risks, using CRISPR for gene editing may have disastrous side effects such as potentially leading to cancer.

He Jiankui claimed that he used the technology to alter a gene called CCR5 to reduce the risk of of HIV infection in embryos before implanting them in a woman, who then gave birth to twin girls. He claimed another CRISPR baby may be on the way from another pregnant woman. It is unclear if He has actually done what he claimed, and he has not yet published his results in a peer-reviewed journal. Nevertheless, the response to He’s claims have been strongly negative. Many people are concerned that He violated ethical norms by editing human embryos, especially because the overall consensus among scientistsin the field of gene-editing was that “there is a need for caution” and to only use the technology after “much more research to meet appropriate risk/benefit standards.”

Since the public has learned about He’s experiments, numerous scientists, including pioneers in the CRISPR field, have spoken out against He’s actions and have called for a temporary moratorium on similar experiments. Southern University of Science and Technology in China, where He has been on unpaid leave since February, has opened an investigation into He after finding out about his research. China’s National Health Commission is also investigating He.

Amid the backlash, He defended himself and his actions at the Human Genome Editing Summit in Hong Kong, claiming to be “proud” of his work. Dr. He has not been seen since the summit, however, and there are now concerns that he may be missing.

(Ed Yong, the Atlantic)

 

Trump emphasizes workforce training in new vision for STEM education

The White House released a new five-year strategic plan for science, technology, engineering, and mathematics (STEM) education this week, with a vision that “all Americans will have lifelong access to high-quality STEM education and the United States will be the global leader in STEM literacy, innovation and employment.” The report emphasizes workforce training in STEM, focusing primarily on opportunities outside of traditional classroom settings, such as apprenticeships. The plan also highlights the need for more diversity in STEM, such as minorities and women.

Overall the strategic plan focuses on four pathways to success: developing and enriching partnerships between educators, employers, and the community; engaging students in trans-disciplinary learning, including advancing innovation and entrepreneurship education; building computational literacy; and operating with transparency and accountability. The plan put forth by the Trump administration diverges from some of the key priorities of the former administration, including efforts focused on traditional academic environments such as training more teachers, and improving STEM instruction in colleges and universities. Instead, this plan appears more focused on how STEM education prepares students for the years after schooling is completed. “STEM education is absolutely critical to supporting the American worker, and this plan brings together a number of programs that are part of our emphasis on the American worker,” said Michael Kratsios, deputy assistant to the president at OSTP.

(Jeffrey Mervis, Science)

 

NASA’s InSight Mars explorer lands safely on the Red Planet

For only the eighth time in human history, a spacecraft has been landed on Mars. The InSight lander touched down on Martian soil on November 26, 2018 after over six months of space travel.

NASA’s InSight mission aims to gather information about Mars, and is part of the NASA Discovery program for focused solar science missions. InSight will study the crust, mantle, and core of Mars, to allow scientists to learn more about the formation of rocky planets in the solar system.

InSight has already begun taking photos of the surface of Mars, which have been posted on social media accounts such as Twitter. The lander has also set up solar panels, which allows InSight to power its cutting edge instruments. In doing so, the lander set an ‘off-world record,’ generating more electrical power than any previous vehicle on the planet’s surface. InSight project manager Tom Hoffman spoke on the importance of this achievement, “The 4,588 watt-hours we produced during sol 1 means we currently have more than enough juice to perform these tasks and move forward with our science mission.” This almost doubles the energy produced in a Martian day produced by NASA’s Curiosity rover, which previously held the record.

InSight will continue taking pictures of the surface of Mars to study its new surroundings and use its robotic arm to set up instruments to place them on the surface of Mars for the next few weeks. It will take two to three months before the lander begins conducting science on the Red Planet.

 

(Sarah Kaplan, Washington Post)

 

 

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Written by sciencepolicyforall

December 6, 2018 at 5:23 pm