NEW YORK (GenomeWeb News) – The UK's Human Genetics Commission said in a new report today that genetic tests that identify the carrier status of couples that are prospective parents would be beneficial if they were more widespread and accessible to all who want them, but that education and support systems should be made available and certain ethical lines be drawn up.
In a report developed at the request of the UK National Screening Committee (NSC), HGC said that it found "no specific social, ethical or legal principles" that would make preconception genetic testing for disease traits unacceptable.
Such testing in fact would be desirable, the commission found, particularly if it can be made available to all who may benefit from it and individuals are able to make autonomous family planning decisions.
"Currently, there is variable and inconsistent access to preconception genetic tests in the UK," HGC stated.
The review became necessary because improvements in genetic testing technologies have led to tests for more biomarkers, at higher speed, and lower cost than ever before. These tests now are becoming available within the UK national health care system and through private offerings, including screening of fetuses for inherited conditions during pregnancy. Preconception testing for genetic conditions so far has been less common, but it is expected to continue to become more popular.
Would-be parents confronted with the results of a biomarker-based test for disease carrier status showing an increased risk for disease in their child may have several choices, including preparing in advance for having a child together, adopting, avoiding pregnancy, testing pregnancies and considering termination, or using other reproductive options.
When it comes to having carrier-status information, HGC stated, earlier is better. For that reason, the commission argued that if carrier screening is offered for a genetic condition while a baby is in the womb, then preconception screening should be offered for that same condition.
HGC recommended that children and young people should learn about antenatal and preconception testing in their final years of compulsory schooling, and that information about these tests should be available from a range of sources, including primary care, family planning, and IVF clinics, pharmacies, and other organizations.
Couples who discover an increased risk for a genetic condition should be referred to health professionals, including clinical geneticists and genetic counselors, who understand the condition and can discuss options.
HGC said that its consideration and recommendations have been guided by two principles: that respect for reproductive autonomy should imply that a range of reproductive options should be available, and that where those options are available, individuals should be supported in making informed choices.
The genetics policy group GeneWatch UK has expressed some concern about HGC's recommendations that young couples considering having children take preconception tests.
"Gene tests can be helpful for some people who know they have a rare disorder in their family but the idea that young people should be choosing partners or deciding to use IVF based on their DNA is both dangerous and misleading," GeneWatch Director Helen Wallace said in a statement.
"The HGC appears to be recommending that young people and their partners should consider being tested and not having babies if both parents are a carrier, or if one person has a genetic disorder," GeneWatch stated.
"Even simple tests can sometimes be wrong and complex genetic risk predictions are largely meaningless," Wallace added. "People from high risk families need good genetics services but screening large numbers of healthy people for conditions they are never going to get would be a massive waste of precious NHS resources. Teaching more children to eat healthily would be much more beneficial."