Ethical considerations and conclusions

Our ethical analysis starts from consideration of how the reproductive goals and decisions of prospective parents are embedded within a context of knowledge (about the role of the genome and about their own genetic status) and possibilities for action (provided by the social and technological context) that links different types of interests and responsibilities (of individuals to each other and to society, and of society to individuals).

We have divided the ethical considerations into three sets, relating to the interests of:

  • the people immediately involved, i.e. the prospective parents and their future children;
  • others in society who may be indirectly affected and society as a whole; and
  • future generations, and the human species in general.

People immediately involved

The key interests to consider are the reproductive interests of parents, and the welfare of the future person.

Reproductive interests of parents

These are principally:

  • the interest in having a child;
  • the interest in their child being genetically related to them; and
  • the interest in their child being free of inherited disorders.

There are many reasons why people want to have genetically related children, and people’s interest in doing so is protected by a widely recognised human right. These interests may, for some people, be enabled by the availability of assisted reproductive technologies, which may (or may not) be publicly funded. For some people who carry or are affected by inherited genetic disorders, the use of assisted reproductive technologies, such as preimplantation genetic testing, already offer a way of managing the possibility of a future child inheriting the disorder.

Welfare of the future person

There are some important distinguishing features of heritable genome editing interventions that bear upon considerations of the welfare of the future person. The situation in which genome editing is one of a number of reproductive options is significantly different from the situation where a person already exists and any intervention might be more clearly seen as ‘treating’ that person. Whatever decision is made among these options is a condition of the future person’s existence rather than simply affecting the condition in which they exist.  This makes the question of their welfare relative not only to their own interests (as in the case of simple treatment), but to the interests of their prospective parents (in having a child in the first place).  There are several difficulties encountered when thinking about the welfare of future people, however.

Welfare is more than ‘good health’. Welfare incorporates not just physical health, but social and psychological wellbeing.

Context and perspective. How particular states of embodiment (which might include disability or impairment) are experienced depends, to some extent, on a person’s particular circumstances, including their physical and social environment, and the availability of healthcare and assistance.

Uncertainty of expression. Although the effects of many clinically recognised genetic conditions can be predicted with some confidence, many conditions are much more complex and their expression is much harder to predict, varying greatly from person to person.  Many variations must be understood in the context of the genome as a whole, as well as external, environmental factors.

The safety of the techniques used. Uncertainty about the risks of unintended consequences of the genome editing technique itself is a concern for many people. Furthermore, once the change is made in that first future person, it may be present in the genomes of their descendants, unless any steps are taken to reverse it.

Possible alternatives. Because no technique is without risk, in assessing welfare it is important to consider the relative safety of genome editing alongside alternative approaches.  In the case of heritable genome editing interventions these include a range of reproductive options that might be available.

We conclude…

Reproductive cells that have been subject to heritable genome editing interventions should only be used for purposes that are consistent with the welfare of the future person.

  • We recommend that research should be carried out on the safety and feasibility of heritable genome editing interventions to establish standards for clinical use.
  • We recommend that social research should be carried out to develop our understanding of the welfare implications for the future person.

Others in society

The reproductive choices that individuals make have impacts most obviously for themselves and their future children. However, the ways that individual interests are pursued can have effects for others in society.

The prospect of genome editing becoming a widespread technology in human reproduction remains speculative at this stage, but if it should happen, there are potentially significant impacts for society. These include:

  • Population diversity. Heritable genome editing could contribute to the reduction or even elimination of some serious inherited diseases from a population; on the other hand, variants associated with disease might also be associated with other, beneficial characteristics, which would also be lost.
  • Perceptions of ‘normal’ reproductive choices. If genome editing were to become more normal this could bring into question the choices of people who ‘refuse’ to use it. A shift in behaviours and expectations may affect evaluation of the responsibilities of prospective parents towards their future children. It could put pressure on prospective parents to have children using reproductive technologies to secure conventional outcomes.
  • Attitudes towards disabled people. The existence of reproductive technologies and prenatal diagnosis techniques that provide information about genetic disorders to inform the selection of embryos or termination of pregnancies is thought by some people to reinforce negative messages about disability, and to propagate the view that a disabled person’s life is not worth living. This could lead to stigmatisation and discrimination. A practical consequence of there being fewer people with certain disabilities could be that there is less professional and public familiarity, and social acceptance of these conditions, and less investment in research, treatment, and support services.
  • Equity and justice. If access to genome editing is unequally distributed, for example, because of the financial cost, the potential benefits will not be shared equally amongst those in society. This may exacerbate and reinforce existing social division and inequality.

We conclude….

The use of heritable genome editing interventions would only be ethically acceptable if carried out in accordance with principles of social justice and solidarity.

  • We recommend that heritable genome editing interventions should be permitted only after their impact on others who might be adversely affected has been assessed, including through consultation with such people; and measures to mitigate these effects have been put in place.
  • We recommend that arrangements should be put in place to monitor the effects of heritable genome editing interventions on those who might be adversely affected; and there should be measure to require periodic review of authorisation of the procedures and to trigger a moratorium if necessary.

Future generations and humanity in general

Consideration of the potential consequences of heritable genome editing interventions for future generations of the human species leads to the question of whether genome editing involves a threat to our common humanity.

It could be argued that if the aim is to replace a genetic variant with another variant that is found elsewhere in the human population, this may not be as troubling from an ethical perspective as introducing a novel variant that is not currently found in the human population, as the latter might be perceived as a ‘non-human’ genome. However, linking human identity to the possession of a particular kind of genome is both difficult and unnecessary.

  • It is unlikely that we will ever know all the genetic variants that exist everywhere in human population.
  • It would bring into question the status of genetic variation that occurs (and has occurred) as a result of undirected evolutionary processes.

We take the view that there is much more to being human than the possession of a particular kind of genome and that the entitlement to human rights does not depend on the possession of a human genome (even if such a thing could be described) or on the presence of a particular set of variants.

We conclude…

If heritable genome editing were to become feasible, those whose genomes have been edited should be entitled to the same enjoyment of human rights as everyone else.

We therefore recommend that governments in the UK and elsewhere should develop an international Declaration affirming that people born as a result of genome editing interventions, and their descendants, shall be entitled to the same enjoyment of human rights as everyone else.

Ethical principles

Taking all of these findings together, we conclude that the potential use of genome editing to influence the characteristics of future generations could be ethically acceptable in some circumstances, but only if certain conditions are met.

We propose two ethical principles to guide the development and application heritable genome editing interventions.

The use of heritable genome editing interventions should be intended to secure, and be consistent with, the welfare of a person who may be born as a consequence of interventions using genome edited cells.

The use of heritable genome editing interventions should be consistent with social justice and solidarity so that it should not be expected to increase disadvantage, discrimination, or division in society.

 

 

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