Anticipating public concern over genome editing

Genome editing: an ethical review

The Nuffield Council has released a key document on ethical implications of genome editing. You'll notice that it is an open document, a work in progress because technology is evolving. If you want an excerpt check this short guide.

It should be remembered that most prospective technologies fail, and that some lead to undesirable consequences, a fact often obscured by ‘whig’ histories that reconstruct the history of successful technologies and their beneficial social consequences. Scientific discovery and technological innovation is important but not inevitable. Most important among the factors shaping technological development is human agency. It is human agency, in terms of decisions that are made about directions of research, funding and investment, the setting of legal limits and regulatory principles, the design of institutions and programmes, and the desire for or acceptance of different possible states of affairs, that will determine whether, and which, prospective technologies emerge and, ultimately,
their historical significance.

Nuffield council work is of interest, meanwhile, China is already testing CRISPR technology in humans, no ethical concerns...

Josep Segú - Barcelona

The value of diagnostic information

The Value of Knowing and Knowing the Value: Improving the Health Technology Assessment of Complementary Diagnostics

Last summer the Office of Health Economics released an inspiring paper on the value of diagnostic information related to companion diagnostics and next generation sequencing genomic tests. I read it recently and its appproach sheds additional light on a difficult issue:

Traditional cost-effectiveness analysis conducted as part of HTA focuses on three key elements:
1. Life years gained
2. Improvements in patient quality of life
3. Cost-savings within the healthcare system (also called “cost-offsets”).
Elements 1 and 2 are often combined in the quality-adjusted life year (QALY) by HTA bodies.
Elements 1, 2, and 3, plus the cost of the technology, are then used to assess the  cost effectiveness of the technology.
The next element most often included is “productivity” or “time value”, reflecting gains and losses related to the value of the patient’s time either when receiving medical care or related to the impact of absenteeism or presenteeism due to illness. Another element - less commonly measured - is nonmedical cost-savings outside the healthcare sector, such as transport costs and family caregiving.
Based on our systematic literature review, we identified and defined five additional elements
related to the value of knowing and the value of information:
• Reduction in uncertainty - additional value from knowing a technology is more likely to work
• Value of hope - willingness to accept greater risk given a chance for a cure
• Real option value - the value of benefiting from future technologies due to life extension
• Insurance value - psychic value provided by invention of an innovative medical product and by the accompanying financial risk protection afforded by a new treatment
• Scientific spillovers - value due to other innovations that become possible once a new technology has been proven to work.

I have discussed many times such additional issues, specially the real option value. Unfortunately measurement of such items are not that easy. Anyway, it's good to take into account and let's hope new developments on this topic.

 

Photobook Phenomenon

Falsehood as ingredient of populist health policy

On Rumors: How Falsehoods Spread, Why We Believe Them, and What Can Be Done

Today I would like to suggest you to read Barack Obama in his farewell speech. It's an inspiring piece to understand US and democracies in general. Inequality, racism and polarization are the three key isues to tackle.
He said:

For too many of us, it’s become safer to retreat into our own bubbles, whether in our neighborhoods or college campuses or places of worship or our social media feeds, surrounded by people who look like us and share the same political outlook and never challenge our assumptions. The rise of naked partisanship, increasing economic and regional stratification, the splintering of our media into a channel for every taste – all this makes this great sorting seem natural, even inevitable. And increasingly, we become so secure in our bubbles that we accept only information, whether true or not, that fits our opinions, instead of basing our opinions on the evidence that’s out there.

This trend represents a third threat to our democracy. Politics is a battle of ideas; in the course of a healthy debate, we’ll prioritize different goals, and the different means of reaching them. But without some common baseline of facts; without a willingness to admit new information, and concede that your opponent is making a fair point, and that science and reason matter, we’ll keep talking past each other, making common ground and compromise impossible.

Without a common baseline of facts there is no possibility to talk to your political opponent. Nowadays, fake news like health privatization are continuously spreading without any foundation. Our health minister speaks incredibly about that in our Parliament. Such obsession has driven to submit a new unnecessary law on health contracting.We are now in an obsession focused policy era.
To understand this phenomena, Sunstein wrote a book in 2008, before thee term post-truth era, that explains the basics and what to do.
Cass Sunstein says in the book:

Rumors are nearly as old as human history, but with the rise of the Internet, they have become ubiquitous. In fact we are now awash in them. False rumors are especially troublesome; they impose real damage on individuals and institutions, and they often resist correction. They can threaten careers, relationships, policies, public officials, democracy, and sometimes even peace itself. Many of the most pervasive rumors involve governments—what officials are planning and why.

This small book has two goals. The first is to answer these questions: Why do ordinary human beings accept rumors, even false, destructive, and bizarre ones? Why do some groups, and even nations, accept rumors that other groups and nations deem preposterous? The second is to answer this question: What can we do to protect ourselves against the harmful effects of false rumors? As we shall see, part of the answer lies in recognizing that a “chilling effect” on those who would spread destructive falsehoods can be a truly excellent idea, especially if those falsehoods amount to libel.

Sensible people believe rumors, whether or not they are true. On the Internet, self-interested, malicious, and altruistic propagators find it increasingly easy to spread rumors about prominent people and institutions. Such rumors cast doubt on their target’s honesty, decency, fairness, patriotism, and sometimes even sanity; often they portray public figures as fundamentally confused or corrupt. Those who are not in the public sphere are similarly vulnerable.

Rumor transmission frequently occurs as a result of cascade effects and group polarization. Indeed, rumors spread as a textbook example of an informational cascade: imperfectly or entirely uninformed people accept a rumor that they hear from others, and as more and more people accept that rumor, the informational signal becomes very strong, and it is hard for the rest of us to resist it, even if it is false.

Group polarization also plays a large role, as people strengthen their commitment to a rumor simply because of discussions with like-minded others.

 If you want people to move away from their prior convictions, and to correct a false rumor, it is best to present them not with the opinions of their usual adversaries, whom they can dismiss, but instead with the views of people with whom they closely identify

The signal of the rumor may be so strong that though reality is absolutely different, and everybody is finally conceding it the value of truth. This is sadly what has happened to health privatization debate.

The value of health, and how to measure it

Valuing Health: WELL-BEING, FREEDOM, AND SUFFERING

Too often people talk about the value of health, and few are those that try to measure it. Now you have the opportunity to have a look at the book that summarises the state of the art on measuring health from different perspectives, clinical and research, epidemiology and economics (resource allocation). The implications of health in well being are explored, and the author says:

Valuing health states by their average consequences for well-being has the unfortunate implication that disabilities count as significant health problems only if the people who have them are significantly worse off than the people without them. With respect to disabilities, such as blindness, to which people adapt, this implication leaves the health analyst with a choice between asserting falsely that the blind necessarily have lower levels of well-being or asserting falsely that blindness is not a serious disability.
This unfortunate implication, coupled with the difficulties in measuring the value of health by eliciting preferences or by measuring subjective experience, raises doubts about the project of valuing health by its bearing on well-being, which chapter
10 explores. The value of health differs in important ways from well-being and indeed appears to be easier to measure than well-being.

And we all agree that health is a crucial factor for well-being, though its measurement is uncertain up to now.

PS. A wide review of the book.

On sugar as a toxic substance. How little is still too much?

THE CASE AGAINST SUGAR

Last book by Gary Taubes takes a difficult way, how to demonstrate sugar as a toxic substance for our health. Although he tries to show evidence for his words, he finally concedes the following conclusion:

Ultimately and obviously, the question of how much is too much becomes a personal decision, just as we all decide as adults what level of alcohol, caffeine, or cigarettes we’ll ingest. I’ve argued here that enough evidence exists for us to consider sugar very likely to be a toxic substance, and to make an informed decision about how best to balance the likely risks with the benefits. To know what those benefits are, though, it helps to see how life feels without sugar.

The "very likely" expression is crucial. Unfortunately we don't have a explicit causal explanation of the impact of sugar on metabolic syndrome, for example. I think that epigenetics will provide neew perspectives on the issue, however we will have to wait. Meanwhile reducing exposure is the best advice.

PS. On the sugar sweetened beverage taxes. And in this blog

Arrow in memoriam

K. J. Arrow passed away this Wednesday. He is one of the giants of economics and the founder of health economics. It is difficult to summarise his works in few words. You'll find obituaries in the Post and NYT. Josep M. Colomer has written an interesting post in his blog (social choice perspective). Tony Culyer has published also his obituary (health economics perspective)

An interview in a recent book reviews his works and opinions. Regarding healt economics, he says:

I was asked to study, as a theoretical economist, health care. This was a paper that I regard very highly, one of the best things I ever did. I think I mentioned that in fact, afair amount of my research is the result of people asking me these kinds of questions. I studied Social Choice because somebody asked me a question. A now retired professor, Victor Fuchs, was then at the Ford Foundation, and they wanted to get studies done of social problems. They wanted studies of welfare—in the ordinary sense of the word—of medical care and of education. For each of these areas, they wanted one study by somebody who had worked in the field and one by a theorist, and I’m a theorist who had not necessarily worked with people.

In my case, I was asked to work on medical care. I read up on the literature, and gradually a pattern emerged that essentially the parties know different things. The physician knows a lot that the patient doesn’t, and therefore the patient can’t check on the quality of medical care in the same way we buy a loaf of bread. It’s not like I’ll buy that loaf again. But with medical care, you can’t be sure because you don’t know that much. It’s the same thing between the insurer and the physician or the patient. So I said that with medical care, noneconomic factors, essentially ethical codes, play a role in keeping the system together. But I didn’t have a theory at the time, I just had a statement. It was pretty clear to me that non-economic factors do play a major role. What is considered good practice, that’s what keeps the system going. The trouble is that I’ve seen the limits of economic analysis. I could see one solution, but it was very different from market kinds of solutions. But I did have a theory about it.

When I look at other people, they don’t have theories either, or they have rather vague theories. When I try to impart this to students, of course it’s a very confusing message. That’s one of the reasons I don’t think I’ve been a great teacher. I’ve perhaps had students who did appreciate what I was doing, although they tended to pick up the more technical parts of it. I’m a little disappointed they haven’t tried to tackle the broader picture. If they’re working with it, they’ve done very fine work, going well beyond what I did. So I’d say that would be a rather lengthy answer to your question. I see myself primarily as a scholar, as a thinker about things, trying to enlist others in this thinking. Yes, I think I would say that more so than others.

PS. Arrow in my posts

Genome editing, closer than you think

Human Genome Editing Science, Ethics, and Governance

Last week the US patent office ruled that hotly disputed patents on the CRISPR revolutionary genome-editing technology belong to the Broad Institute of Harvard and MIT. In a former post I explained the dispute. Genome editing in my opinion shouldn't be patented and will see exactly the impact of such ruling in US and elsewhere in the next future.
If you want to know in detail what does genome editing means for the future of life sciences, have a look at NASEM book.

It is now possible to insert or delete single nucleotides,interrupt a gene or genetic element, make a single-stranded break in DNA, modify a nucleotide, or make epigenetic changes to gene expression. In the realm of biomedicine, genome editing could be used for three broad purposes: for basic research, for somatic interventions, and for germline interventions.

CRISPR (which stands for clustered regularly interspaced short palindromic repeats) refers to short, repeated segments of DNA originally discovered in bacteria. These segments provided the foundation for the development of a system that combines short RNA sequences paired with Cas9 (CRISPR associated protein 9, an RNA-directed nuclease), or with similar nucleases, and can readily be programmed to edit specific segments of DNA. The CRISPR/Cas9 genome-editing system offers several advantages over previous strategies for making changes to the genome and has been at the center of much discussion concerning how genome editing could be applied to promote human health.

I would just want to say that these patents destroy the soul of science, since access should be available with no barriers for the development of  innovation. Patents are not the incentive for discovery in this case, as I explained in my post, natural processes should'nt be patented. And this is why today is a really sad day.

PS. My posts against patents

Michael Kiwanuka. Home again