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Current Ethical Requirements for Mobile Phone Surveys

January 28, 2019

Are not clear or adequate for non-communicable disease surveillance, finds new global stakeholder survey led by our Joseph Ali

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Current Ethical Requirements for Mobile Phone Surveys

Monday, January 28th, 2019

Few scholars have focused on the ethics of mobile health (mHealth) for active surveillance of risk factors for non-communicable diseases (NCDs) in low- and middle-income countries (LMICs). A new study led by the Johns Hopkins Bloomberg School of Public Health research team under the Bloomberg Philanthropies Data for Health Initiative (D4H) sought to address this gap by surveying global stakeholders to identify ethics-related knowledge and perceptions on the use of mobile phone surveys (MPS) to gather NCD risk factor information in LMICs.

The study was published in January by Global Public Health.

The study is believed to be the first of its kind to identify ethics-related attitudes and practices of stakeholders invested in the conduct and oversight of mHealth in LMICs. Global stakeholders consisting of those experienced in law, mHealth, ethics, social science, NCDs, public health surveillance and MPS technology were surveyed. Respondents came from 40 countries, with 61% indicating a nationality corresponding to a developing region. Nearly three-quarters reported that “close to all” of their professional time takes place in, or directly involves, LMICs.

”We found that while there was strong support and enthusiasm for mobile phone surveys overall, the majority of stakeholders expressed that the current ethical and regulatory requirements for conducting the surveys were unclear or inadequate, potentially due to a lack of guidance on the use of digital technologies for active surveillance,” says lead author Joseph Ali JD, an assistant professor in the Bloomberg School’s Department of International Health and associate director for global programs at the Johns Hopkins Berman Institute of Bioethics. The study also note that ethics guidelines for mobile and digital health may be context and technology specific, and that the study’s findings can inform the process of developing such guidance for mobile phone-based active disease surveillance.

…Continue reading ‘Current ethical requirements for mobile phone surveys not clear or adequate for non-communicable disease surveillance, finds new global stakeholder survey’

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After ‘CRISPR Babies,’ International Medical Leaders Aim to Tighten Genome Editing Guidelines

January 25, 2019

Less than two years after producing an exhaustive report on human genome editing, the NASEM are planning an international commission on the most controversial use of that technology — creating “CRISPR babies,” medicine academy president Dr. Victor Dzau announced on Thursday at the World Economic Forum in Davos

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How to Stop Rogue Gene-Editing of Human Embryos?

January 24, 2019

Some U.S. researchers knew of a Chinese scientist’s intentions to implant edited embryos but were unable to stop him. Now scientific institutions are trying to devise global safeguards

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Gene Drive Technology Makes Mouse Offspring Inherit Specific Traits from Parents

January 24, 2019

Kim Cooper and Hannah Grunwald write, “As mouse geneticists, we spend a lot of time waiting for mice to make more mice.”

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Gene Drive Technology Makes Mouse Offspring Inherit Specific Traits from Parents

Thursday, January 24th, 2019

As mouse geneticists, we spend a lot of time waiting for mice to make more mice. Their small size, ease of care and willingness to mate have made mice the “mammal of choice” for scientists for more than a century. Indeed, these wriggly fur balls that strike fear in the hearts of some are owed a debt of gratitude for all they’ve taught researchers about human health and how mammalian bodies are built and function.

In our lab we use mice to understand how limbs evolved. In particular, we’re fascinated by the genetic changes made over tens of millions of years since the first four-legged animal flopped out of water and onto land. It is remarkable that the dolphin’s fin and the bat’s wing, for example, are derived from a common ancestor. Our aim is to discover which of the differences in their DNA caused dramatic changes in the shapes of different mammals. Specifically, we work with a small, desert-dwelling rodent called the jerboa, which has almost absurdly long hind limbs. One very powerful strategy to understand the jerboa’s enormous feet would be to engineer a mouse with jerboa limb development genes and see if those genetic changes make a mouse with longer legs.

But if we want to understand the complicated genetic history of the evolution of the jerboa limb, we need to study several genes at once. This causes a problem similar to that of biomedical researchers working with mice to understand human genetic diseases. Although mice and humans are similar in many ways and are vulnerable to some of the same genetic diseases, our most common diseases are caused by more than one gene.

…continue reading ‘Gene Drive Technology Makes Mouse Offspring Inherit Specific Traits from Parents’

Image: By Pogrebnoj-Alexandroff – open free cources, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=44440744

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The Conversation

A Third MRT Baby Is On Its Way

January 23, 2019

It has been recently reported that a 32 year old Greek woman is 27 weeks pregnant with a child who was conceived after a mitochondrial replacement technique (MRT) – in this case Maternal Spindle Transfer (MST). If true, this would be just the third birth following a reproductive technique that mixes the DNA of three people

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A Third MRT Baby Is On Its Way

Wednesday, January 23rd, 2019

Written by César Palacios-González

It has been recently reported (link in Spanish) that a 32 year old Greek woman is 27 weeks pregnant with a child who was conceived after a mitochondrial replacement technique (MRT) – in this case Maternal Spindle Transfer (MST). If true this is really big news in terms of reproductive medicine and biotechnology, we are still waiting for data to be published. If successful, this would be just the third birth following a reproductive technique that mixes the DNA of three people (you will probably remember the big media buzz a couple of years ago about ‘three parent babies’). This newest feat was achieved by a group of Spanish and Greek scientists; the clinical trial was carried out in Greece due to the fact that in Spain MRTs are not on the list of authorised reproductive techniques.

Before discussing what I consider to be the main ethical issue with this case, let us talk a bit about mitochondria and MRTs. Every human egg contains thousands upon thousands of mitochondrion. These tiny organelles have the really important task of producing the energy (in the form of ATP) that first the egg, then the developing embryo, and finally the human adult need to adequately function. It is thus not strange that when mitochondria do not work as they should the human body ‘malfunctions’. And it is also not strange that mitochondrial dysfunction more significantly affects the organs that require the most energy, for example the brain and the muscles.

To understand, broadly, what can go wrong with mitochondria, we need to bear in mind two of their characteristics: a) that they have their own DNA, and b) that they are mostly solely maternally transmitted. Regarding the former, inside every nucleated human cell there is nuclear DNA (nDNA) and there is mitochondrial DNA (mtDNA)….

…Continue Reading ‘A third MRT-Baby is on its way’

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Practical Ethics

Scientist Behind CRISPR Twins Sharply Criticized In Government Probe, Loses Job

January 22, 2019

He Jiankui deliberately sidestepped regulations, dodged oversight, and used fake ethical review documents in hopes of gaining “personal fame” for a worldwide first, according to preliminary results from a Chinese governmental investigation reported today

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Scientist Behind CRISPR Twins Sharply Criticized In Government Probe, Loses Job

Tuesday, January 22nd, 2019

He Jiankui, the Chinese researcher who claimed to have edited the genomes of twin baby girls in a heritable way—and earned widespread condemnation for conducting a risky procedure with little potential benefit—deliberately sidestepped regulations, dodged oversight, and used fake ethical review documents in hopes of gaining “personal fame” for a worldwide first, according to preliminary results from a Chinese governmental investigation reported today.

In response to the news, Southern University of Science and Technology in Shenzhen, China, announced it was rescinding He’s contract as an associate professor and terminating his teaching and research activities, effective immediately.

In November 2018, He claimed to have engineered the genomes of early embryos to give the girls and their descendants resistance to HIV, the virus that causes AIDS. The dubious achievement, which He described at a scientific meeting and in YouTube videos in the wake of media reports, relied on CRISPR, a genome-editing technique that has never before been used on human embryos that were then implanted. He’s experiment was swiftly condemned by researchers and ethicists within China and around the world who insisted that safe, effective ways already exist to prevent HIV infection. What’s more, many questions still remain about the CRISPR technology and the potential for it to accidentally cause unwanted, dangerous changes.

…continue reading ‘Scientist Behind CRISPR Twins Sharply Criticized In Government Probe, Loses Job’

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Science

Scientists Disagree About the Ethics and Governance of Human Germline Editing

January 18, 2019

Despite the appearance of agreement, scientists are not of the same mind about the ethics and governance of human germline editing. A careful review of public comments and published commentaries in top-tier science journals reveals marked differences in perspective

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Scientists Disagree About the Ethics and Governance of Human Germline Editing

Friday, January 18th, 2019

The current chapter in the debate about the societal and political implications of human germline editing took off nearly four years ago, in response to a laboratory experiment in which researchers in China used CRISPR technology on nonviable human embryos. In March 2015, an article titled “Don’t Edit the Human Germline,” coauthored by scientists and others working on somatic cell genome editing and associated with the Alliance for Regenerative Medicine, appeared in the “Comment” section of Nature. A week later, Science published a “Perspective” commentary coauthored by another group, most of them scientists convened by CRISPR codiscoverer Jennifer Doudna, under the title “A prudent path forward for genomic engineering and germline genetic modification.”

The first article described the “tenuous” therapeutic benefit, and the likely serious risks (including risks to future generations), of germline editing. The authors concluded that this technology was “dangerous and ethically unacceptable,” in part because “permitting even unambiguously therapeutic interventions could start us down a path towards non-therapeutic genetic enhancement.” They further suggested that “a voluntary moratorium in the scientific community could be an effective way to discourage human germline modification.”

In contrast, the second article stressed “the promise of curing genetic disease.” While it concluded that “there was an urgent need for open discussion of the merits and risks of human genome modification by a broad cohort of scientists, clinicians, social scientists, the general public, and relevant public entities and interest groups,” it asserted that the goal of such discussion would be to “enable pathways to responsible uses of this technology, if any, to be identified.” The authors recognized that it would be premature to move forward with human germline genome editing, but studiously avoided any use of the term moratorium.

…continue reading ‘Scientists Disagree About the Ethics and Governance of Human Germline Editing’

Image: By National Human Genome Research Institute (NHGRI) from Bethesda, MD, USA – CRISPR-Cas9 Editing of the Genome, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=52360100

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Hastings Center

The Future of Gene Editing — Toward Scientific and Social Consensus

January 17, 2019

On the day after Thanksgiving 2018, Jennifer Doudna, whose research on bacterial immune systems led to the gene-editing technique known as CRISPR, received a startling email from the Chinese scientist He Jiankui. “Babies born,” read the subject line. (with comments from our Jeffrey Kahn)

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The Future of Gene Editing — Toward Scientific and Social Consensus

Thursday, January 17th, 2019

On the day after Thanksgiving 2018, Jennifer Doudna, a biochemist at the University of California, Berkeley, whose research on bacterial immune systems led to the gene-editing technique known as CRISPR (for Clustered Regularly Interspaced Short Palindromic Repeats),¹ received a startling email from the Chinese scientist He Jiankui. “Babies born,” read the subject line. Though Doudna was previously unaware that He had been working to create the world’s first “CRISPR babies,” she had long worried that CRISPR-related research was leaping ahead of the consensus necessary to support its ethical use. In her memoir about gene editing,² Doudna describes a nightmare in which she is summoned by a pig-faced Hitler to describe the potential implications of the “amazing technology” she developed. But it’s the preoccupation of Doudna’s waking life, “that through a series of reckless, poorly conceived experiments, scientists would prematurely implement CRISPR without proper oversight or consideration of the risks,” that has proven more prescient.

Indeed, as the details of He’s experiment emerged, it quickly became impossible to separate the implications of the science from the ethics violations that had enabled it. He apparently attempted to edit the CCR5 gene in the germlines of two embryos. CCR5 is thought to be the major receptor through which HIV gains access to T cells, and He aimed to confer lifetime resistance to HIV. The magnitude of negligence was staggering — from the absence of clinical need (there are safe and effective ways to prevent HIV), to the uncertainty of harms (the twins may be at heightened risk from infections such as West Nile virus and influenza, and other potential consequences of both on- and off-target effects remain unknown), to a misleading consent process (the experiment was described as an “AIDS vaccine development project”), to a total lack of transparency (the data have not yet been published).³

…continue reading ‘The Future of Gene Editing — Toward Scientific and Social Consensus’

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NEJM

Current Ethical Requirements for Mobile Phone Surveys

Current Ethical Requirements for Mobile Phone Surveys

After ‘CRISPR Babies,’ International Medical Leaders Aim to Tighten Genome Editing Guidelines

After ‘CRISPR Babies,’ International Medical Leaders Aim to Tighten Genome Editing Guidelines

How to Stop Rogue Gene-Editing of Human Embryos?

How to Stop Rogue Gene-Editing of Human Embryos?

Gene Drive Technology Makes Mouse Offspring Inherit Specific Traits from Parents

Gene Drive Technology Makes Mouse Offspring Inherit Specific Traits from Parents

A Third MRT Baby Is On Its Way

A Third MRT Baby Is On Its Way

Scientist Behind CRISPR Twins Sharply Criticized In Government Probe, Loses Job

Scientist Behind CRISPR Twins Sharply Criticized In Government Probe, Loses Job

Scientists Disagree About the Ethics and Governance of Human Germline Editing

Scientists Disagree About the Ethics and Governance of Human Germline Editing

The Future of Gene Editing — Toward Scientific and Social Consensus

The Future of Gene Editing — Toward Scientific and Social Consensus

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