Sector: health

Article by Jochen Lennerz, Nick Schneider and Karl Lauterbach: “Efforts to share health data across borders snag on legal and regulatory barriers. Before detangling the fine print, let’s agree on overarching principles.

Imagine a scenario in which Mary, an individual with a rare disease, has agreed to share her medical records for a research project aimed at finding better treatments for genetic disorders. Mary’s consent is grounded in trust that her data will be handled with the utmost care, protected from unauthorized access, and used according to her wishes. 

It may sound simple, but meeting these standards comes with myriad complications. Whose job is it to weigh the risk that Mary might be reidentified, even if her information is de-identified and stored securely? How should that assessment be done? How can data from Mary’s records be aggregated with patients from health systems in other countries, each with their own requirements for data protection and formats for record keeping? How can Mary’s wishes be respected, both in terms of what research is conducted and in returning relevant results to her?

From electronic medical records to genomic sequencing, health care providers and researchers now have an unprecedented wealth of information that could help tailor treatments to individual needs, revolutionize understanding of disease, and enhance the overall quality of health care. Data protection, privacy safeguards, and cybersecurity are all paramount for safeguarding sensitive medical information, but much of the potential that lies in this abundance of data is being lost because well-intentioned regulations have not been set up to allow for data sharing and collaboration. This stymies efforts to study rare diseases, map disease patterns, improve public health surveillance, and advance evidence-based policymaking (for instance, by comparing effectiveness of interventions across regions and demographics). Projects that could excel with enough data get bogged down in bureaucracy and uncertainty. For example, Germany now has strict data protection laws—with heavy punishment for violations—that should allow de-identified health insurance claims to be used for research within secure processing environments, but the legality of such use has been challenged…(More)”.

Article by Manuel Corpas: “…As a bioinformatician, I am now focusing my attention on gathering the statistics to show just how biased medical research data are. There are problems across the board, ranging from which research questions get asked in the first place, to who participates in clinical trials, to who gets their genomes sequenced. The world is moving toward “precision medicine,” where any individual can have their DNA analyzed and that information can be used to help prescribe the right drugs in the right dosages. But this won’t work if a person’s genetic variants have never been identified or studied in the first place.

It’s astonishing how powerful our genetics can be in mediating medicines. Take the gene CYP2D6, which is known to play a vital role in how fast humans metabolize 25 percent of all the pharmaceuticals on the market. If you have a genetic variant of CYP2D6 that makes you metabolize drugs more quickly, or less quickly, it can have a huge impact on how well those drugs work and the dangers you face from taking them. Codeine was banned from all of Ethiopia in 2015, for example, because a high proportion of people in the country (perhaps 30 percent) have a genetic variant of CYP2D6 that makes them quickly metabolize that drug into morphine, making it more likely to cause respiratory distress and even death…(More)”

Article by Gavin Freeguard: “Covid-19 did not only dominate our lives in April 2020. It also dominated the list of new words entered into the Oxford English Dictionary.

Alongside Covid-19 itself (noun, “An acute respiratory illness in humans caused by a coronavirus”), the vocabulary of the virus included “self-quarantine”, “social distancing”, “infodemic”, “flatten the curve”, “personal protective equipment”, “elbow bump”, “WFH” and much else. But nestled among this pantheon of new pandemic words was a number, one that would shape our conversations, our politics, our lives for the next 18 months like no other: “Basic reproduction number (R₀): The average number of cases of an infectious disease arising by transmission from a single infected individual, in a population that has not previously encountered the disease.”

“There have been many important figures in this pandemic,” wrote The Times in January 2021, “but one has come to tower over the rest: the reproduction rate. The R number, as everyone calls it, has been used by the government to justify imposing and lifting lockdowns. Indeed while there are many important numbers — gross domestic product, parliamentary majorities, interest rates — few can compete right now with R” (tinyurl.com/v7j6cth9).

Descriptions of it at the start of the pandemic made R the star of the disaster movie reality we lived through. And it wasn’t just a breakout star of the UK’s coronavirus press conferences; in Germany, (then) Chancellor Angela Merkel made the most of her scientific background to explain the meaning of R and its consequences to the public (tinyurl.com/mva7urw5).

But for others, the “obsession” (Professor Linda Bauld, University of Edinburgh) with “the pandemic’s misunderstood metric” (Nature: tinyurl.com/y3sr6n6m) has been “a distraction”, an “unhelpful focus”; as the University of Edinburgh’s Professor Mark Woolhouse told one parliamentary select committee, “we’ve created a monster”.

How did this epidemiological number come to dominate our discourse? How useful is it? And where does it come from?…(More)”.