The UK’s Human Genetics Commission has today published a report stating that there are no ethical barriers preventing the use of genetic testing in couples before they conceive.
The new report compiled by the Human Genetics Commission (HGC), the government’s advisors on genetics, has concluded that there are “no specific social, ethical or legal principles” that would rule out the use of ‘preconception genetic testing’ as part of a population-wide screening programme. This type of genetic testing would look at the DNA of prospective parents before they conceive in order to assess the risk of their children inheriting a range of hereditary conditions.
The report looked at a number of ethical and social issues surrounding genetic testing, such as the need to educate the public so that it could make informed choices if offered screening. Crucially, this report does not mean that a screening programme will be set up in the future, only that it appears be ethically acceptable to do so. Before a screening programme of this type could be launched, the benefits, risks and costs involved would also be examined, as the project might not be feasible or of overall benefit to the public.
The HGC is an independent body that advises the UK government about new developments in human genetics and how they might impact on individuals. The Commission has 21 members, who are experts in genetics, ethics, law and consumer affairs. They also consult with a panel of people who have direct experience of living with genetic disorders.
In recent years, genetic testing and diagnosis have improved technologically, become cheaper and broadened in their potential use. Given the possibilities presented by these rapid changes, the HGC was asked to examine the issue by the UK National Screening Committee (NSC). The UK NSC is a government-funded agency that reviews the evidence regarding screening programmes, and it advises ministers and the NHS on how appropriate they would be for introduction in the UK population.
The HGC was initially asked to provide advice on “the social, ethical and legal implications relevant to whole population preconception genetic screening”. However, the HGC was not asked to look at the logistics of implementing a national screening programme, and the publication of their report does not mean that such a programme would necessarily be introduced. In effect, the HGC has examined whether a national genetic screening programme would be ethically acceptable; other bodies, such as the NSC and the government, would now need to examine whether such a programme would be desirable, feasible or cost effective.
However, the HGC makes some recommendations on the structure of any potential screening programmes, such as stipulating that individuals are given adequate advice and time to consider their options so that they can make informed choices on the matter.
Although originally asked to examine the social, ethical and legal implications of a national screening programme, the HGC’s final report is broader in scope. The report focused on:
Some news sources, such as the Daily Mail, have suggested that the report actively calls for children to be screened before becoming sexually active. This is not the case. The report only sets out the ethical considerations that must be addressed if voluntary screening were to be offered to older children. The report also states that young people should be given mandatory education on the matter before any voluntary testing is performed, and that genetic carrier testing is not normally offered to people under 15-16 years old.
The HGC developed and reported a set of principles to ensure that preconception genetic screening could be implemented in a safe and equitable manner. Among these recommendations were that:
The report does not list specific conditions that would be covered by preconception genetic testing, but the guidelines are based on testing for diseases that are caused by mutations in a single gene (for example, cystic fibrosis). They do not address screening for complex diseases that may have a genetic component, such as those where single or multiple genes may convey part of the overall risk of a condition.
The report did not detail specific diseases that could be screened for, but one of the recommendations suggested that preconception screening should, where feasible, be offered for diseases for which antenatal genetic screening is already offered.
It is important to highlight that this is a preliminary examination of the ethical considerations surrounding population-wide preconception genetic screening. It primarily looked at whether it would be possible to provide an ethical, equitable voluntary population screening programme. The report did not assess whether one could realistically be implemented.
Before any population-wide preconception screening programmes could be introduced, the UK NSC would need to assess the benefit, risks, and economic feasibility of screening for each condition being considered. This assessment would be likely to take into account public feelings on the matter.
People who have a family history of genetic conditions or belonging to an ethnic group at risk of specific genetic conditions can consult their doctors about genetic counselling and the options available when planning a family.