Claiming for global regulation of genome editing

Genome editing and human reproduction

The Nuffield Council of Bioethics release last July a key document on Bioethics of Genetics. Now that a chinese "scientist" claims to have edited the genomes of twin baby girls is the right moment to read it. And the key principles are:

Principle 1: The welfare of the future person

Gametes or embryos that have been subject to genome editing procedures (or that are derived from cells that have been subject to such procedures) should be used only where the procedure is carried out in a manner and for a purpose that is intended to secure the welfare of and is consistent with the welfare of a person who may be born as a consequence of treatment using those cells.

Principle 2: Social justice and solidarity

The use of gametes or embryos that have been subject to genome editing procedures (or that are derived from cells that have been subject to such procedures) should be permitted only in circumstances in which it cannot reasonably be expected to produce or exacerbate social division or the unmitigated marginalisation or disadvantage of groups within society.

New concerns are arising from CRISPR application and international regulations would be necessary to cope with them. The Association for responsible research and innovation in genome editing is precisely requesting this effort. The only precedents are the Declaration of Human Rights and it seems that it will not be an easy task to fulfill.

PS. Check the former post on Nuffield reports on this topic

Ageing policies, a long way ahead

WILL POPULATION AGEING SPELL THE END OF THE WELFARE STATE?

A new book by WHO provides some insights about the impact of ageing. The frame of the message is built around these questions:

1. What are the implications of population ageing for health and long-term care needs and costs?
2. What are the implications of population ageing for paid and unpaid work?
3. What are the implications of population ageing for the acceptability, equity and
effectiveness of financing care and consumption?
4. The policy options: How can decision-makers respond to population ageing?
5. Building on what we know and improving the evidence base for policy-making.

And these are the policies they suggest:

I. Policies to promote healthy and active ageing
II. Policies to promote cost-effective health and long-term care interventions
III. Policies that support paid and unpaid work
IV. Policies to support acceptable, equitable and efficient funding and income transfers

This is just a start. Since ageing is a multidimensional issue, governmental policies should embrace a wider multisector strategy (that the book forgets). There is a long way ahead.

Doctor Prats - Caminem junts

Driving evidence-based health policy

Driving Better Health Policy: “It’s the Evidence, Stupid”

Baicker and Chandra are backing an evidence-based health policy. I reviewed it in a previous post. Now the Uwe Reinhardt Memorial Lecture insists on it.

Speaking in favor of evidence-based health policy can be more controversial than one might think. Health policy analysts, health services researchers, and economists in particular often get in trouble by trying to quantify what many hold as unquantifiable and trying to put a price tag on what many think should be priceless.

This is the ouline of the lecture:

WHAT IS AND IS NOT A POLICY
Slogans are Not Policies
Differentiating Between Goals and Policies
EVIDENCE IS INHERENTLY EMPIRICAL
Evidence is Rarely Straightforward
Fact Patterns Alone Do Not Reveal Policy Effects
WORKING TO BASE POLICY ON EVIDENCE
Separating Evidence from Preferences
Using Evidence to Inform Policy

And these are the take-away messages:

• Serious policy assessment requires a detailed description of the policy—slogans are not policies.
• Clearly articulating and differentiating between goals and policies is crucial to evaluating the most effective way to achieve policy goals.
• Evidence is often mixed or ambiguous. Researchers should not let their own policy preferences bias their interpretation or synthesis of the evidence. 
• Evidence does not speak for itself. Researchers need to dedicate effort to timely, accessible, reliable translation.

Agreed. Unfortunately, our close politicians are not interested in evidence if it goes against their ideological criteria. Therefore, claiming evidence for health policy is useless, unless the premise of "politicians will take into account evidence" is really credible. The lecture forgot this "minor" issue, the cognitive biases of health policy.

Josep Segú