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Posts Tagged ‘ethics

Science Policy Around the Web – March 6, 2018

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By: Cindo O. Nicholson, Ph.D.

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Artificial Intelligence & Ethics

Artificial intelligence could identify gang crimes-and ignite an ethical firestorm

Today, many industries and our favorite gadgets use some form of artificial intelligence (AI) either to make better predictions on user/consumer behavior. AI is also being adopted by police departments to highlight areas where crime is likely to occur thus helping patrol officers prevent crimes before they occur (i.e. predictive policing). Recently at the Artificial Intelligence Ethics & Society (AIES) conference in New Orleans LA, researchers presented a new algorithm that could classify crimes as gang-crimes based on partial information. In particular, the new algorithm can identify gang crimes using only 4 pieces of information: the primary weapon used, the number of suspects, the neighborhood and location (street corner vs. alley for example) where the crime took place.

Many agree that the findings presented (published by the AIES) could change the way the police approach and respond to crimes by classifying the crime beforehand as gang-related. However, not all in attendance were convinced that the new algorithm would be any better than an officer’s intuition and experience. In fact, there were those who believed that there could be unintentional, negative consequences of relying on such an algorithm. A point of contention at the conference was the appearance that the research team did not give sufficient consideration to whether the training data was controlled for bias, or what would happen if individuals were misclassified as gang members.

AI is a powerful technology, and its use can be applied to solve problems in fields like ecology and conservation, public health, drug development, and others. However, like all powerful technology its development must keep pace with its regulation, and the consideration of its potential misuses and unintended consequences.

(Matthew Hutson, Science Magazine)

Science Education

Florida’s residents could soon get the power to alter science classes

The possibility that the public can make recommendations on what instructional materials are used in science classes is moving closer to reality. Two education bills are being considered by Florida’s legislature that would grant Florida’s residents the means to recommend what instructional materials are used in the classrooms of schools in their district.

The education bills being considered would add to a law enacted in June 2017 that grants Florida’s residents the right to challenge the topics educators teach students. In particular, the bills under consideration will allow Florida’s residents to review instructional materials used in class, and suggest changes to the materials. However, the final decision on whether recommendations from residents are accepted would still rest with the school board.

Among the concerns of the scientific community is that these laws would provide a mechanism for creationists, climate-change deniers, and flat-earth proponents (commonly referred to as “flat-earthers”) to insert their non-scientific viewpoints into scientific lesson plans. On the other hand, State Representatives in support of these bills contend that highlighting different viewpoints are important and would allow for debate and drawing one’s own conclusions.

While engaging the public on the content of educational curricula could have its merits, it could have negative consequences when public opinion overrides curricula that have been developed from knowledge gained and refined by rigorous, scientific interrogation over several decades. If more education bills that allow the public to challenge instructional materials are going to be approved, it will be imperative that individuals with scientific backgrounds be a voice of reason on school boards.

(Giorgia Guglielmi, Nature Magazine)

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March 7, 2018 at 11:28 am

Science Policy Around the Web – February 9, 2018

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By: Rachel Smallwood Shoukry, PhD

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Ethics

Big tobacco’s offer: $1 billion for research. Should scientists take it?

A controversial debate has arisen in recent years about whether scientists should accept funding from sources that have interests at odds with improving the human condition and promoting health. Specifically, should researchers accept research money from tobacco companies? This practice used to be generally accepted up until a couple of decades ago, but as the harmful effects of smoking have become more clear, as well as evidence of the tobacco industry’s attempts to cover-up and misdirect the public from becoming aware of those effects, the scientific community has become reluctant to partner with “big tobacco” and is more aware of conflicts of interest.

The tobacco company Philip Morris International (PMI), makers of Marlboro and other cigarette brands, is looking to invest in research of illegal cigarette trade and smuggling. It recently established a partnership with the University of Utrecht (UU) in the Netherlands to investigate this phenomena, but UU has now pulled out of the deal after a large amount of backlash. However, PMI is still looking to fund research on the tobacco industry, setting up the potential for more controversy.

There is additional concern about this possibility due to PMI’s funding of the Foundation for a Smoke-Free World. The foundation has stated that its goals are related to smoking cessation and preventing smoking deaths through several approaches. However, many fear that the foundation is simply a front for PMI to be able to distribute funds under a better-sounding name while continuing to fund research that can be presented in a misleading way to distract from legitimate health concerns. Several top institutions have denounced the Foundation for a Smoke-Free World for using PMI’s funds, and many have vowed that they will not seek grants from or collaborations with the foundation.

Proponents of allowing the funding via the tobacco industry are interested in research of cigarette alternatives aimed at harm reduction, arguing that little is known about their long-term health implications. They say there is little funding outside of the tobacco companies for these types of studies and don’t know where else to turn. They are also worried about the climate surrounding the topic, after the response UU received when accepting research dollars from PMI. But opponents do not believe that PMI and other companies are seeking harm reduction or to hide the truth about tobacco’s health effects through their research activities and marketing tactics. This ethical debate is sure to continue as PMI disclosed that it has had over 50 applications for funding.

(Martin Enserink, Science)

NSF

US science agency will require universities to report sexual harassment

The NSF has announced it will implement a new requirement that institutions receiving grants must report grant-funded investigators who have sexual or other types of harassment claims against them and whether they were put on leave pending investigation. Many are welcoming this step as movement toward a code of conduct that has been called-for in recent years. It is also coming on the heels of several research initiatives into sexual harassment in STEM fields and other organizations implementing policies to expose and prevent harassment. Although the #MeToo movement only brought sexual harassment claims to the forefront of our culture a few months ago, the STEM field had its own bombshell revelation followed by the unveiling of many stories of sexual harassment a couple of years ago when a renowned astronomer resigned after an investigation revealed years of sexual misconduct and harassment. This new policy is also likely related to the US Congress commissioning the Government Accountability Office to look into sexual harassment by individuals funded by federal scientific agencies.

The notice the NSF sent out also directs the recipient institutions to have clear policies on what constitutes harassment and what is appropriate behavior, as well as giving clear instructions to students and employees on how to report harassment. The institutions themselves will be responsible for conducting investigations and deciding repercussions. Until now the NSF has had an option to voluntarily report sexual misconduct of award recipients, but it was rarely used. The notice states that the NSF can remove the responsible personnel from the grant or even suspend or terminate the grant following the mishandling of a report.

Despite the general positive view of this attempt by the NSF to deter harassment and establish serious consequences, some have expressed concerns at the potential implications and logistics of implementation. It was suggested that this step may discourage universities from undertaking investigations of sexual harassment, since universities benefit from grant money and reputation just as the investigators do. Another aspect to consider is that universities have different policies on sexual harassment and misconduct, and what may be allowable at one institution may be a severe breach at another. It was not immediately clear from the notice how decisions will be made with regard to the grant following investigations. While perhaps not perfect, this policy by the NSF is a first step in the right direction to ensuring everyone can pursue their scientific endeavors in a harassment-free environment.

(Alexandra Witze, Nature)

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February 9, 2018 at 4:01 pm

Science Policy Around the Web – January 30, 2018

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By: Kelly Tomins, BSc

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By RedCoat (Own work) [CC-BY-SA-2.5], via Wikimedia Commons

Cloning

Yes, They’ve Cloned Monkeys in China. That Doesn’t Mean You’re Next.

Primates were cloned for the first time with the births of two monkeys, Zhong Zhong and Hua Hua, at the Chinese Academy of Sciences in Shanghai. Despite being born from two separate mothers weeks apart, the two monkeys share the exact same DNA. They were cloned from cells of a single fetus, using a method called Somatic Cell Nuclear Transfer (SCNT), the same method used to clone over 20 other animal species, beginning with the now infamous sheep, Dolly.

The recently published study has excited scientists around the world, demonstrating the potential expanded use of primates in biomedical research. The impact of cloned monkeys could be tremendous, providing scientists a model more like humans to understand genetic disorders. Gene editing of the monkey embryos was also possible, indicating scientists could alter genes suspected to cause certain genetic disorders. These monkeys could then be used a model to understand the disease pathology and test innovative treatments, eliminating the differences that can arise from even the smallest natural genetic variation that exists between the individuals of the same species.

Despite the excitement over the first cloning of a primate, there is much work to be done before this technique could broadly impact research. The efficiency of the procedure was limited, with only 2 live births resulting from 149 early embryos created by the lab. In addition, the lab could only produce clones from fetal cells. Now it is still not possible to clone a primate after birth. In addition, the future of primate research is uncertain in the United States. Research regarding the sociality, intelligence, and DNA similarity of primates to humans has raised ethical concerns regarding their use in research. The US has banned the use of chimpanzees in research, and the NIH is currently in the process of retiring all of its’ chimps to sanctuaries. In addition, there are concerns regarding the proper treatment of many primates in research studies. The FDA recently ended a nicotine study and had to create a new council to oversee animal research after four squirrel monkeys died under suspicious circumstances. With further optimization, it will be fascinating to see if this primate cloning method will expand the otherwise waning use of primate research in the United States.

The successful cloning of a primate has additionally increased ethical concerns over the possibility of cloning humans. In addition to the many safety concerns, several bioethicists agree that human cloning would demean a human’s identity and should not be attempted. Either way, Dr. Shoukrat Mitalipov, director of the Center for Embryonic Cell and Gene Therapy at the Oregon Health & Science University stated that the methods used in this paper would likely not work on humans anyways.

(Gina Kolata, New York Times)

Air Pollution

EPA ends clean air policy opposed by fossil fuel interests

The EPA is ending the “once-in always-in” policy, which regulated how emissions standards differ between various sources of hazardous pollutants. This policy regards section 112 of the Clean Air Act, which regards regulation of sources of air pollutants such as benzene, hexane, and DDE. “Major sources” of pollutants are defined as those that have the potential to emit 10 tons per year of one pollutant or 25 tons of a combination of air pollutants. “Area Sources” are stationary sources of air pollutants that are not major sources. Under the policy, once a source is classified as a major source, it is permanently subject to stricter pollutant control standards, even if emitted pollutants fall below the threshold. This policy was intended to ensure that reductions in emissions continue over time.

The change in policy means that major sources of pollution that dip below the emissions threshold will be reclassified as an area source, and thus be held to lower air safety standards. Fossil fuel companies have petitioned for this change for years, and the recent policy change is being lauded by Republicans and states with high gas and coal production. The EPA news release states that the outdated policy disincentives companies from voluntarily reducing emissions, since they will be held accountable to major source standards regardless of the amount of emissions. Bill Wehrum, a former lawyer representing fossil fuel companies and current Assistant Administrator of EPA’s Office of Air and Radiation, stated reversing this policy “will reduce regulatory burden for industries and the states”. In contrast, environmentalists believe this change will drastically increase the amount of pollution plants will expel due to the softening of standards once they reach a certain threshold. As long as sources remain just below the major source threshold, there will be no incentive or regulations for them to lower pollutant emissions.

(Michael Biesecker, Associated Press)

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January 30, 2018 at 3:30 pm

Science Policy Around the Web – January 26, 2018

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By: Jennifer Patterson-West, Ph.D.

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Drug Pricing

At $850,000, price for new childhood blindness gene therapy four times too high, analysis says

Advances in medicine have greatly shifted the prognosis of many diseases. Heart disease is still the leading cause of death in the United States, nevertheless, deaths due to cardiovascular disease have declined by over 50% since the 1950s. This sharp decline correlates with the introduction of the first beta blocker in 1964, which could effectively lower high blood pressure. Diseases, such as childhood leukemia, AIDS, and hepatitis C, that were once considered a death sentence are now being treated.

However, these advances come at a cost.  In 2014, the Tufts Center for the Study of Drug Development (CSDD) released a report estimating the cost to develop a new drug to be $2.5 billion. With the high cost of drug development, it is not surprising that drug prices are soaring in all sectors. Pharmaceutical price hikes have sparked significant controversy due to the financial stress they put on patients. Last year, Mylan Pharmaceuticals increased the cost of an EpiPen by 500% fueling the debate on instituting government control on drug pricing in the U.S. The pricing of a new gene therapy for blindness at $850,000  has once again sparked this debate.

Advocates of price control point to Europe, where drug pricing is already bureaucratically controlled. In Europe and elsewhere, many drugs are available at a fraction of the cost. Prices in these countries have been significantly reduced by the implementation of external price referencing (EPR). In this system, Drugs are categorized into classes based on therapeutic effect and a reference point is set for each drug class.  This system follows the logic that manufacturers have considerable pressure to minimize cost when there are good alternatives.

Opponents of price control underscore a widening gap in the innovation of new drugs between the United states and Japan and Germany, where drug price controls have been enacted over the past few decades. It has been proposed that price control inadvertently limits the funds pharmaceutical companies direct to research and development. Pharmaceutical development comes with a high risk for investors, therefore, without the incentive of high profits, it is speculated that investors would move to other sectors of industry, such as high technology. Despite these odds, investment into research and development by the global pharmaceutical industry is only second to the tech industry.

(Andrew Joseph, STAT News)

Ethics

When A Tattoo Means Life Or Death. Literally

In the United States, an advanced directive or living will is the standard way that individuals inform medical professionals of the treatments they would like to receive if they are dying or permanently unconscious. These forms can provide instructions regarding the use of machines to maintain life, feeding tubes, and intravenous fluids, “do not resuscitate” (DNR) orders, as well as organ and tissue donation preferences. Do not resuscitate (D.N.R.) means that doctors will not intervene with CPR or advanced cardiac life support (ACLS) if a patient stops breathing or their heart stops. Nevertheless, under this advisement, patients will continue to receive palliative care to mitigate pain or other physical symptoms.

These legal documents give patients control over their health care when serious illness may impair their judgement or overwhelm their ability to make a decision.  Although, if a patient arrives at a hospital unconscious or alone these directives may not be communicated to the medical staff. For this reason, individuals have taken to wearing their medical preferences on their body predominately in the form of a bracelet or necklace.

A recent case study reported an instance where a 70-year-old man arrived at the University of Miami hospital unconscious without an advance directive on file. The patient had a tattoo stating “do not resuscitate” with his signature across his chest. The tattoo gave doctors pause regarding how to proceed when the patient stopped breathing. Their initial reaction was to disregard the tattoo and provide necessary care since the alternative was an irreversible path. The legal recognition of the tattoo’s directive was uncertain. After reviewing the patient’s case, Dr. Kenneth Goodman, an expert medical ethicist advised the medical staff to honor the tattoo. Fortuitously, this decision was subsequently supported by a D.N.R. on file with the Florida Department of Health.

In contrast, a separate case study reported a patient with a D.N.R. tattoo that specified that it did not reflect his current preference for end-of-life care. These two cases left doctors uncertain about how to respond in future cases and emphasized the need for a central database containing advanced directives that is accessible to medical professionals.

Some states have established electronic databases for advanced directives. These states include New York, Oregon, Utah, West Virginia, and California. Residents of other states are recommended to file their living will at a private registry, such as the U.S. living will registry. In all cases, the usefulness of these registries is limited by a hospital or doctor’s use of the service.  With decentralized registries, it is inefficient for medical staff to search for a patient’s living will, especially when rapid response is necessary.  For this reason, many hospitals rely on an internal system containing patient records. A careful discussion of standard practices for obtaining documentation or recognizing physical identification of D.N.R. needs to be established among the American Medical Association so that medical staff can rapidly respond to a patient’s medical needs and wishes.

(Rebecca Hersher, NPR)

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January 26, 2018 at 5:23 pm

Science Policy Around the Web – December 8, 2017

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By: Roger Mullins, Ph.D.

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Chemical Safety

Chlorpyrifos Makes California List of Most Dangerous Chemicals

Last Wednesday, the California Office of Environmental Health Hazard Assessment (OEHHA) passed a vote to add the organophosphorus pesticide Chlorpyrifos to Proposition 65, an extensive list of over 900 chemicals known to cause cancer, birth defects, or reproductive harm. While Chlorpyrifos was previously considered for inclusion on this list in 2008, updated scientific information gave the OEHHA cause for reassessment.

This new data included further information on the neurodevelopmental toxicity of Chlorpyrifos in humans and wildlife. Of particular concern to this board was its harmful effect on fetal brain development. Central to this decision was the extensive review of scientific evidence provided in the 2014 and 2016 EPA Human Health Risk Assessments, as well as new and additional findings not previously reviewed in these assessments.

On a national level, the findings of earlier EPA risk assessments resulted in a national ban on homeowner use as far back as 2000. The recent 2014 and 2016 reports further cemented the evidence for pervasive neurodevelopmental toxicity and also highlighted the danger of dietary exposure from residues in drinking water and crops. An all-out ban on Chlorpyrifos was proposed in 2015, revoking all pesticide tolerances and cancelling its registrations, but this was ruled out by the current Environmental Protection Agency (EPA) in 2017. This pesticide is still under registration review by the EPA, which re-evaluates their decision on a 15-year cycle.

Inclusion on California’s Proposition 65 list does not amount to a ban within the state, though products containing Chlorpyrifos will have to be labeled as such starting in late 2018. This action on the state level stands in contrast to federal decisions, and is a revealing lesson in regard to the complexity of national response to scientific evidence.

(Sammy Caiola, Capital Public Radio)

Gene Drives

US Military Agency Invests $100m in Genetic Extinction Technologies

Gene-drives, an emerging powerful gene-editing technology, have been drawing considerable attention and controversy for their proposed use in disease vector control. This method involves the release of an animal that has been genetically modified into a wild population, with the aim of breeding in genes that have been designed to reduce the species’ ability to spread disease. These introduced genes are preferentially inherited, resulting in their eventual dominance in the population. For example, a gene could be designed and introduced to provide resistance to a particular parasite or reduce fertility. This technique is proposed for use in controlling mosquito-borne diseases such as malaria and the Zika virus, as well as to halt the spread of invasive species.

Controversy over this technique however also hinges on its strengths. The primary concerns are the likelihood of animals with favorable modifications crossing over international borders, downstream effects on dependent species, and the possibility of irreversible harm to the ecosystem if the technique is misapplied. Appropriately, much of this concern comes from fellow scientists. In light of this, scientists and policy-makers alike have been proactive about addressing the safety and ethical issues presented, coming up with a set of specific guidelines to advance quality science for the common good. These entail an effort to promote stewardship, safety, and good governance, demonstrate transparency and accountability, engage thoughtfully with affected communities, stakeholders, and publics, and foster opportunities to strengthen capacity and education. Consensus on these issues is intended to help move this promising field forward in the face of growing public scrutiny.

Recently, a trove of emails from US scientists working on gene drive technology was acquired under the Freedom of Information Act and disseminated to the media. Some of these emails revealed the Bill and Melinda Gates Foundation’s engagement with a public relations company to influence the UN moratorium on the use of this technology. The Foundation has long been a financial supporter of the Target Malaria research consortium that seeks to develop gene drives for the eradication of Malaria. The concern surrounding the release of these emails realizes the common fear of scientists involved in research with the potential to fall under the public eye, as ironically, even attempts to recruit expertise in portraying your research favorably may be seen as damning.

This will inevitably be true of any powerful emerging technique to come in the future as well. With the advance of science’s ability to address problems effectively, there will be obstacles towards implementing new technologies and addressing concerns from the communities they may affect. Some of these will be valid and cause for moratorium and introspection, and some will be more attributable to sensationalism. Understanding and navigating these differences will be an increasing and ever-present concern for policy-minded scientists.

(Arthur Neslen, The Guardian)

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December 8, 2017 at 1:35 pm

Science Policy Around the Web – November 28, 2017

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By: Patrice J. Persad, PhD

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Mental Health

Brain Patterns May Predict People at Risk of Suicide

Suicide is the second common cause of death for adults under 27 years old in the United States. In light of this, being able to identify individuals who are more likely to attempt suicide may transform suicide prevention initiatives’ outcomes.

At the end of last month, scientists published that machine learning (ML) algorithms were able to yield accurate prognoses by using functional magnetic resonance imaging (fMRI) profiles to differentiate subjects with suicidal thoughts (17 cases) and those without (17 controls) . After being exposed to a display of thirty words classified as positive (some examples: “kindness,” “carefree,” and “innocent”), negative (some examples: “guilty,” “evil,” and “gloom”), or pertaining to suicide (some examples: “lifeless,” “hopeless,” and “apathy”), each participant’s brain activity, or “neural signature”, for each word was captured by fMRI.

The accuracy of predicting individuals who had experienced suicidal thoughts was calculated as 91%. Upon stratifying the cases, a portion of those who had experienced suicidal thoughts were successfully identified as having attempted ending their lives in the past (nine out of 17). From categorizing individuals by suicide attempt status, the ML algorithm’s predictions were 94% accurate. The study’s authors envision clinical applicability, including improving patient surveillance, which could impact the suicide rate and lead to treatment or therapies concentrating on the cerebral areas identified by the algorithm. However, the researchers counsel that the study must be replicated with more subjects, particularly across different demographic groups and including individuals that have been diagnosed with psychiatric disorders but do not experience suicidal thoughts.

Various ethical concerns are raised by the application of this research, including the complications surrounding valid consent and how the life insurance industry could use the data. Classification of potential thoughts by ML may intrude privacy beyond what volunteers may feel they are consenting to when they agree to be recorded by fMRI or similar technologies. Neural signature classification in patients may have secondary uses, which can expand outside of medicine and healthcare areas, and must be evaluated. Misuse by life insurance companies, inviting discrimination against candidate insurance policy holders because of true and false classification of suicide ideation from fMRI, is a hypothetical scenario.

(Jon Hamilton, National Public Radio)

Species Conservation

‘Gene Drives’ Are Too Risky for Field Trials, Scientists Say

Consider the following illustration. On the island of New Zealand, a clan of non-native stoats, short-tailed weasels, are pulverizing numbers of the endemic takahes, flightless birds. Settlers in the 1800s had set stoats free through the terrain to prey on the rabbits, disturbers and unwanted consumers of agricultural crops. Thus, the stoat in this case may have been thought of as posts in a living rabbit-proof fence. Consequently, impacts on the native ecosystem were and are negative underlining the decline in and harm to takahes and other flightless bird species, such as the kiwi, New Zealand’s national bird. This currently heralds the question “How can population sizes of invasive species, such as these stoats, be reduced?”

A proposed solution to the aforementioned question features the germline genome editing system CRISPR to introduce genetic elements designed to undermine the reproductive success of a particular species. The idea of a gene drive system is to increase the inheritance, or frequency, of a particular variation in a gene. The CRISPR system can be applied to introduce variation in a gene essential for a given species’ reproductive system. When an animal carrying a CRISPR edited copy of a gene mates with an animal carrying a functional copy of the gene, their offspring will inherit one altered copy and one regular copy. Eventually, as this genetic variation becomes frequent enough, two individuals carrying the altered copy are likely to mate, producing infertile offspring. Then the number of invasive species’ members, the stoats for example, would drop as a result.

Are there any caveats to the CRISPR-based gene drive system for species conservation? A research team headed by Kevin M. Esvelt, the first proposer of gene drives for wild populations, used population models and stimulations to revealed a vital finding: if several gene-drive-modified organisms of an invasive species came into contact and bred with wild-type organisms of the same species, the population of the species as a whole in its native habitat would decrease over time. In other words, the encounter between a wild-type organism and gene drive organism is inauspicious if mating transpires in the species’ native habitat. Based on these findings, the researchers stressed prudence in initiating this application in field studies, which echoed discussions lead by the National Academy of Sciences in 2016.

One alternative may be to engineer gene drives to deteriorate after a certain number of generations. However, according to Esvelt in the context of eradicating vector-borne diseases, such as malaria, restricted gene drive systems affecting only several generations (out of many) may be ineffective in vector populations.

Although the opening example’s setting is New Zealand, the future development and employment of CRISPR-based gene drive systems depend on international cooperation plus participation because other nations may experience the impact of an ecosystem beyond their designated borders. For formulating proper safeguards before field testing commencement, voices from the scientific community, political arena, general community, and other domains across potentially affected countries must be amplified and heard for maximizing the protection of all species.

(Carl Zimmer, New York Times)

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November 28, 2017 at 7:03 pm

Science Policy Around the Web – October 24, 2017

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By: Jennifer Patterson-West, Ph.D.

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source: Max Pixel

Healthcare

Under Trump Rule, Nursing Home Residents May Not Be Able To Sue After Abuse

In October 2016, the Centers for Medicare and Medicaid Services (CMS) listed a final rule that prohibited pre-dispute agreements binding patients to arbitration. Subsequently, the American Health Care Association (AHCA) along with a group of nursing homes sued the CMS resulting in a preliminary injunction on the ruling. In June 2017, revised requirements for long-term care facilities that eliminated the prohibition were released by the CMS.

NPR journalist, Ina Jaffee, highlighted the major limitations of the revised requirement.  Jaffee points out that the new rule will make lawsuits by nursing home residents nearly impossible. The long-term implication is that many victims of negligent care will not have their cases heard by a jury.

The revised requirements require that “all agreements for binding arbitration must be in plain language” and that “the agreement must be explained to the resident and his or her representative in a form and manner they understand.” Senior counsel Kelly Bagby with the American Association of Retired Persons (AARP) notes that the requirement for plain language may be besides the point if that patients are required to sign these agreements.

An elder law attorney, Wendy York, noted that patients are given large stacks of papers to signs without fully comprehending the implications of what they are signing.   These patients are often recovering from a trauma, major surgery, or under the influence of mind altering medications while filling out paper work.  The new ruling would require that the “resident acknowledge that he or she understand the agreement,” however an agreement can be required for admission thereby limiting the option of a resident to refuse the agreement if they are in need of care without access to better accommodations.

These rulings could have larger implications on patient and patient advocate’s legal recourse after receiving substandard treatment. Although the new rules are an improvement on the status quo, they do not go as far as those previously proposed.  Unfortunately, it is our most vulnerable citizens that will have more limited protection under the current ruling. However, when the new rules will go into effect remains to be seen.

(Ina Jaffee, NPR)

 

Genetic Testing

A baby with a disease gene or no baby at all: Genetic testing of embryos creates an ethical morass

Increasing affordability of genomic testing has given people more access to information regarding their own genes and those of their potential offspring. Ethicists and experts are trying to consider the implications of genetic information moving into the hands of consumers. How can or should this information be used to make real-life decisions?

With respect to reproductive medicine, preimplantation genetic testing (PGT) can be used to evaluate potential diseases or disorders in in vitro fertilized (IVF) embryos.  In a 2013 federal report on fertility clinic success, PGT testing was reported for approximately 5% of IVF conceptions. However, experts suspect this figure underestimates the frequency of PGT testing and report that requests are growing. A survey of experts by STAT news relayed that “requests to transfer embryos with genetic anomalies are rare.”

The number of diseases that are tested for in prospective parents and embryos are expanding, some of these diseases have a more severe health impact than others. The question now is where to draw the line? Beyond the scope of severe diseases, patients may want to select an embryo with a specific trait.  In these cases, the physician has to decide what is within the ethical bounds of reproductive medicine.  For example, some members of the deaf or dwarfism community reject the notion that their DNA is categorized as a “genetic anomaly” and may desire a child that shares these traits.

Currently, there are no U.S regulation for these cases. However, regulations in the United Kingdom prohibit the transfer of embryos with severe abnormalities. To provide a foundation for clinicians facing these questions, an opinion was recently published from members of the American Society for Reproductive Medicine outlining potential rationales for providers to assist or decline to assist the transfer of embryos with genetic anomalies.

(Andrew Joseph, STAT)

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October 26, 2017 at 10:05 am