Consent issues risk destroying biobanks, seriously impeding major medical advances: health law experts

Biobanks are an invaluable resource for modern medical research, collecting together genetic, tissue or health data on an unprecedented scale.

Their potential for scientific advances is huge, particularly around medical treatments, and as a result billions have been invested by governments, industry and research institutions to establish vast, complex biobanks.

However, in their eagerness to establish such valuable resources, researchers have not established a standard method to acquire informed consent, meaning a host of legal and ethical principles remain that have the potential to completely derail the entire process, according to University of Alberta health law researchers Timothy Caulfield and Blake Murdoch.

Writing in a freely available article in the journal PLOS Biology, Caulfield and Murdoch argue that urgent policy action is required if biobanks are not to be completely undermined, and thus the associated research be significantly impeded.

“The international research community has built a massive and diverse research infrastructure on a foundation that has the potential to collapse, in bits or altogether,” said Caulfield.

“This issue would benefit from more explicit recognition of the vast disconnect between the current practices and the realities of the law, research ethics and public perceptions.”

While many biobanks have a robust consent process, there are some where although consent is sought, it is not adequate to be completely free of legal risk.

And while in principle it may seem like no one would object to their tissue, genes or health data being used to aid medical breakthroughs, in reality it is entirely possible that negative public perceptions could result in significant legal challenges to the operation of biobanks.

The rise in the idea of biorights, as well as growing distrust of scientists from some quarters, could pose a problem. The involvement of industry partners could also be an issue, with many likely to be concerned about the idea of companies profiting from research that has been aided by their own health data or cells.

While many biobanks are likely to remain successful resources for robust research, there is already some precedent for the destruction of a biobank due to legal issues.

In 2010, for example, the settlement of a legal case forced the Texas Department of State Health Services to destroy over 5 million blood samples from newborn babies, as a result of just 5 parents suing over a lack of proper consent.

In this case, a valuable resource for future research was lost due to a poor consent handling with a tiny number of people.

India says risk to jobs is too great to allow driverless cars to thrive in the country

India’s minister for road transport, highways and shipping has said that the country will not support driverless cars as the threat they pose to jobs is too great.

According to Hindustan Times and The Indian Express, road transport and highways minister Nitin Gadkari has said that driverless technology will not be allowed in India because of the fear that it will increase unemployment.

“We won’t allow driverless cars in India. I am very clear on this,” said Gadkari.

“We won’t allow any technology that takes away jobs. In a country where you have unemployment, you can’t have a technology that ends up taking people’s jobs.”

Nitin Gadkari. Image courtesy of Gppande. Featured image courtesy of Steve Lagreca / Shutterstock.com

Gadkari went on to say that although driverless technology wasn’t right for India, electric vehicles do have a place within the country.

However, the minister said that he wanted electric vehicles to be made in India and would not be reducing import duty on e-vehicles or their parts.

“I have told chiefs of the auto companies recently that world-class electric vehicles can very well be manufactured in India. They are welcome to make them here under Make in India, we will not reduce the import duties,” said Gadkari.

In 2015, during his visit to the US, Prime Minister Narendra Modi met with Tesla CEO Elon Musk at the company’s headquarters in San Jose.

During their meeting, the two discussed how batteries and solar panels could be the future of electricity generation for India, as well as, according to The Indian Express, the possibility of manufacturing affordable cars for India.

It was thought that India could have become a large market for Tesla as well as other driverless cars manufacturers. However, that hope now seems to have been extinguished.

“I saw in Sweden a 70-year-old man was driving a taxi. There, they have less people. Here, we have more people and they need jobs. Driverless cars will take away those jobs. I am certain on this issue,” said Gadkari.