Research Ethics Roundup: Who should have access to biobanks? What impacts will a monkey tariff have? And more

This edition of Research Ethics Roundup covers a UK political party’s position on animal testing, management philosophies for databank access, tariffs’ effects on nonhuman primate research, and an activist push for testing Duchenne muscular dystrophy cures in girls.

Labour plans to phase out animal testing as part of manifesto promise
The Guardian
Amid Brexit tumult and the prospect of a general election, the UK’s Labour Party has released an animal welfare plank in its manifesto. Alongside other concerns including trophy hunting and pet primates, the manifesto takes aim at the use of animals in research. For example, the manifesto describes “a long-term objective to phase out animal testing entirely.” In the nearer term, the party hopes to reduce unnecessary and redundant testing, in addition to increasing transparency in the practice of animal research.

“[Shadow environment secretary Sue Hayman] said Labour wanted to ‘bring Britain’s animal welfare policy into the 21st century’ and protect animals both in the UK and around the world, amid heightened speculation over an early election.”

How Should Scientists’ Access To Health Databanks Be Managed?
The process of allocating scientists’ access to biobanks is a high-stakes series of decisions for institutions that maintain such collections, with ramifications for privacy, informed consent, and more. As such, different biobanks have substantially different policies regarding access to their materials, reflecting not only different aims for the data itself but also different institutional philosophies around that access. Here, NPR looks at three biobanks in the US with drastically different data access policies.

“Some hold the data close, while others are working to make the data as widely available to as many researchers as possible — figuring science will progress faster that way. But scientific openness can be constrained by both practical and commercial considerations.”

Trump’s tariffs on monkeys could ‘severely damage’ US medical research and send labs to China
A 15% tariff on economic imports from China, which went into effect on September 1, applies to the importation of monkeys to be used for research. Though some in the animal research community (including many animal rights activists) applaud the move because they believe it will reduce the use of nonhuman primates for research purposes, others worry that the tariff will drive research back to China, which has fewer safeguards in place for research animal welfare.

“Since most U.S. research projects are constrained by grant-dependent budgets, they would be unable to absorb a 5% to 25% cost spike for monkeys, according to the NABR. While some researchers will be forced to scale back projects due to the tariffs, others might cease U.S. operations and move research to China.”

They rallied around ‘our boys’ as they pushed for a Duchenne cure. Where did that leave girls?
Patient advocates and the scientific community have focused almost exclusively on finding a cure for Duchenne muscular dystrophy in young boys, who make up as many as 99% of the known cases. Only a fraction of girls who carry the mutation will have limitations from the disease, and their symptoms and prognoses vary widely. This has left girls who exhibit symptoms and their families without much direction or hope for a cure in their lifetime.

“But, [Sarepta Therapeutics CEO Doug Ingram] explained, the focus needed to be proving that Sarepta’s therapy was effective, and that meant trials had to avoid any aberrant data that might distort the results. That meant boys only.”