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Why we can almost guarantee that genetic enhancement will never be fairly distributed

By Sinead Prince.

Weโ€™ve been discussing the possibility of genetic enhancement, and the ethics of such technology, for some time now. Many people are quite cautious about the idea of genetically modifying embryos as well as adults, but others have begun waving the green flag rigorously.

Genetic enhancement is the modification of genes using technologies such as CRISPR, for the purpose of bringing about specific kinds of physical traits e.g., blue eyes, bigger muscles, more reliable memories, and empathetic personalities. There are many questions these possibilities raise. For example, should we be modifying human nature? Is this actually good for us? Can we distribute this technology fairly?

It is the last question that I am concerned with. Proponents and critics of genetic enhancements alike argue that this can be done.ย Some argue that we will eventually distribute genetic enhancements, like all other technologies, through trickle down economics.ย Others argue that governments will actively distribute genetic enhancements equallyย because such technologies will boost productivity and therefore the economy.ย Others argue that we mightย be able to distribute genetic enhancements in such a way as to mitigate social or economic disadvantage.

The fundamental problem with all these solutions and ideas is that they misunderstand how genes produce physical traits. The process by which genes produce physical traits is complex and still not entirely understood. However, one important process is the gene-environment interaction. Our environments can directly impact our physical traits by, for example: physically changing our DNA sequences, activating or inactivating specific genes, or intervening in the chemical environment that is responsible for instructing our DNA to make proteins.

These environments are relevant to genetic enhancements. For example, although we cannot choose our parents, our skin colour, or our childhood environments,ย these all directly impact our physical traits including our cognitive abilities and capacities to manage stress. Ourย socioeconomic class also directly and indirectly impacts our physical traits. Those withย low socioeconomic class, for instance, age fasterย than their chronological age. They alsoย experience a disproportionate burden of morbidity, poor exercise,ย increased alcoholย andย tobacco consumption, andย poor diets, all of which are known environments that produce pathological changes to our physical traits. Furthermore, they lack the same opportunities to express and exercise certain physical traits, such as quality education, and extracurricular activities.

We have also begun to realise how some environments actually produce better outcomes when they interact with specific genes. For example, better responses to social feedback and better skill development.

Even if we all had access to genetic enhancements, those subject to social, racial, and economic inequalities, will still suffer the same pathological changes to their physical traits. They might still technically have the โ€˜smartโ€™ or โ€˜musicโ€™ genes, but if they cannot also enjoy an adversity-free childhood or go to quality schools on a regular basis, or access musical lessons, they will not enjoy the same physical traits as their peers. Those with positive environments will therefore not only enjoy the benefits of being โ€˜smartโ€™, but will not experience pathological changes to the very genes that were enhanced. Equal access to genetic enhancement will not produce a fair distribution of the intended benefits of genetic enhancements. We donโ€™t know the exact extent of such inequality, but we do know that if we seek to justify genetic enhancements on the grounds that they can be fairly distributed, the distribution of such physical traits cannot arise without social change.

Even proposals to distribute enhancements to compensate those suffering from inequality, such as by only enhancing them with โ€˜smartโ€™ genes or giving them โ€˜resilientโ€™ genes to change, are not straightforward. First, how does being smart compensate for a life of inequality and exclusion? If you are smart, but still cannot go to school because of socioeconomic inequality, you cannot express such enhancements and develop your physical traits. Second, enhancing people to be resilient to inequality does not justify the inequality they continue to suffer. Being cognitively enhanced is not moral compensation for suffering racism. If ensuring equality of physical traits is the aim in our ethical reasoning, removing the inequalities that already pathologically interfere with peopleโ€™s genes is our first priority.

The gene-environment interaction will prevent any method of distribution from arising as intended. This means that no matter which way we distribute enhancement to achieve fairness, the inequality from our social, racial, and economic environments will always prevent such outcomes from arising. Furthermore, such distribution will exacerbate inequalities by improving the genes of those already privileged with positive environments.

The gene-environment interaction is missing from debates about the distribution of genetic enhancements. This undermines the argument that genetic enhancements are morally permissible because they can be distributed fairly. This is not to say we must ban genetic enhancements, but to show how we can achieve equality, by removing barriers that cause people to experience disadvantage and harm in the first place.

Paper title: The gene-environment interaction: Why genetic enhancement might never be distributed fairly

Author: Sinead Prince

Affiliations: Australian Centre for Health Law Research, Queensland University of Technology

Competing interests: None

Social media accounts of post author: @sinead_prince

The post Why we can almost guarantee that genetic enhancement will never be fairly distributed appeared first on Journal of Medical Ethics blog.

It seems important to study public values regarding priority setting principles, but why exactly?

By Erik Gustavsson and Lars Lindblom.

If you visit a conference or workshop on priority setting there will most certainly be several slots on empirical studies exploring public values about principles for priority setting. Over the last 20 years, there has been numerous such studies, and the interest among researchers to perform such studies accentuated during the pandemic. If you attend one of these slots and stay around for the discussion you will notice that questions and comments tend to focus on methodological design. Indeed, these issues are of general importance for the research community โ€“ but why are the results from these studies relevant? If you have some background in ethics you might, for example, wonder what weight should be ascribed to these studies when making moral judgments about how priority setting should be done. When one faces this question, one may start to reason along the following lines.

On the one hand, public values cannot reasonably tell the whole story about the ethical question: how scarce health care resources should be distributed. For example, suppose a majority in your country believe that people with red hair should be denied intensive care. Such a conclusion seems counterintuitive, to say the least. The mere fact that people express discriminatory views cannot reasonably have anything to do with the moral rightness of such views. On the other hand, public values cannot reasonably have nothing to say about how scarce resources should be distributed. This seems especially strange in a democratic society. Some people think that this discussion can stop here. The conclusion is quite straightforward they say: public values carry some weight for the moral question about how resources should be distributed. We found it difficult to accept this conclusion.

Therefore, we went back to Rawlsโ€™ notion of reflective equilibrium. Drawing on these Rawlsian ideas, we discuss the relevance and roles that empirical studies may plausibly have for the justification of principles for priority setting. Our paper develops a framework that can articulate these different roles in relation to empirical studies of public values and make explicit how different empirical results may have different implications for justification.

The framework distinguishes between four steps in the reflective equilibrium process: i) filtering moral judgements, ii) formulating principles, iii) working back and forth between (i) and (ii), and iv) from the individual to the social.

We also realized that it adds to the richness of the framework to distinguish between the content of moral judgements and the process according to which people arrive at those judgements. Four times two is eight which gave us a matrix of eight positions. Accordingly, there are at least eight different ways in which empirical studies of moral judgment may have relevance for moral justification.

With this matrix in hand, we show, for all eight of the positions in this matrix, how empirical results can inform moral deliberation. This, in turn, indicates several perhaps surprising ways that ethicists should be interested in empirical results. For instance, empirical research on the content of peoplesโ€™ judgements regarding priority setting forms input into the process of moral deliberation. Moreover, empirical work with relevance for the process of formulating principles will be important for that stage of the reflective equilibrium process. The matrix also suggests a number of interesting avenues for empirical researchers to pursue in order to enrich normative work on priority setting. For instance, empirical research on possible propensities to commit fallacies in the process of working back and forth between judgements and principles regarding priority setting would potentially seem very useful. Moving from the individual to the social level, further work on the content of social equilibria regarding priority setting would also seem highly important. The answer, then, to the question of why it would be important to study public values regarding priority setting principles is that empirical results play important roles at all levels of moral deliberation.

ย 

Title of paper: Justification of principles for health care priority setting โ€“ the relevance and roles of empirical studies exploring public values

Authors: Erik Gustavsson [1, 2], Lars Lindblom [1],

  1. Division of Philosophy and Applied Ethics, Department of Culture and Society; Linkรถping University, Sweden.
  2. The National Centre for Priorities in Health, Department of Health, Medicine and Caring Sciences, Linkรถping University, Sweden.

Competing interests

The authors declare that they have no competing interests.

The post It seems important to study public values regarding priority setting principles, but why exactly? appeared first on Journal of Medical Ethics blog.

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