I was fortunate enough to be part of a workshop today looking at the issues around broadening the adoption of genomics in the health system in the UK. As a well-informed layperson, the opportunity to hear from so many experts in the field, from clinical geneticists to public health professionals and health policy experts was a rare treat.
Three things stuck out for me:
I was fortunate enough to be part of a workshop today looking at the issues around broadening the adoption of genomics in the health system in the UK. As a well-informed layperson, the opportunity to hear from so many experts in the field, from clinical geneticists to public health professionals and health policy experts was a rare treat.
Three things stuck out for me:
1- The scientific and healthcare community is, perhaps rightfully, very cautious of the power of ill-informed public opinion and the media to derail scientific progress that can benefit human health, but it is nevertheless keen that the public understand and embrace the exciting direction that new technologies and developments in medical research can drive modern medicine.
2- There is a fragile trust between the public and the health and scientific community that must be nurtured. The public is not always sure sure whom to trust when it comes to an open agenda about scientific progress in health, as so many of the players, whether industry, government or public institutions have, rightly or wrongly, been seen to lose the public’s trust over particular hot issues in recent years. The most trusted are still family physicians.
3- The current generation that is working on the policy and and health system implications of scientific advances grew up in an age when public attitudes to personal information and data were very different to the attitudes we see revealed in the behaviour of people in their twenties and early thirties today. I am nearly 40, and I was one of the youngest in the room.
What do these observations mean?
In reverse order, and IMHO:
3- When we shape policy in fields where we know social attitudes are changing rapidly and there is a gulf in attitude between the “establishment” and the subsequent generations on whom the impact of their decisions is going to be enormous, the establishment must make policy openly and honestly with the attitudes of the young in mind. To do otherwise would be to bequeath to our children and grandchildren a system that was antiquated by design and not fit for purpose.
2 – We need to rebuild trust between the public and the institutions, both public and private, that are charged with delivering progress in science and medicine for the benefit of human health. This needs to be done in a broad spirit of radical transparency and openness, with everyone who has a stake or an interest given a seat at the table, whether they are pro or anti a particular advance or area of science. The days of adversarial relations between the public, its institututions, pressure groups, the media, politicians, health professionals, researchers and industry etc must come to an end. We are dealing with issues that we can only solve if we all work together towards better outcomes. This will mean compromises for all so that we can make progress.
3 – We need to beef up science and health literacy in popular culture – and some are working hard (Dara O Briain, I salute you). Maybe it’s timely to consider that 50 years after unfettered militiary-driven scientific progress brought the world to the brink of nuclear armageddon, and a generation “turned on, tuned in, dropped out” of science, that the result is now a lack of basic health and science knowledge has helped lead to worsening trends in lifestyle diseases, widescale adoption of unproven and bonkers alternative medicine, panics about new technologies, distrust of science, yadda yadda yadda. And for pity’s sake, enough with the hamburgers, people…
