Women with sickle cell trait: reproductive decision-making

There is no universal cure at present for sickle cell disease; therefore, the only way to lessen the risk of transmission is to make informed reproductive choices. The aim of this study was to explore reproductive decision-making in women who are 'healthy carriers' of sickle cell disease. Theoretically, there are options, both in advance of conception and during pregnancy. Nonetheless, carriers may be subject to extraordinary circumstances where it is difficult to recognize options, let alone to make informed choices. Furthermore, with advancing technology and research into the genetic basis of various diseases, such circumstances may become relevant to carriers of all genetic diseases in the future. Reproductive decision-making may therefore play a larger role in tomorrow's scientifically advanced consumer society. We intended to gain insight into the issues surrounding reproductive choices of today by examining sickle cell disease as an exemplar. Thirty-five female carriers of sickle cell disease were interviewed; 34 were of either African or African Caribbean origin. This study found that in these two groups, it could be very difficult for women to talk about their carrier status with partners in advance of becoming pregnant. It was often easier to risk the chance of giving birth to an affected child than to initiate discussions which could expose them to the risk of rejection and the possible loss of opportunity to reproduce. We conclude that health professionals need to consider how carriers of sickle cell disease would proceed to discuss their status with prospective partners when genetic screening, counselling, and information are offered.