Choice

We like to talk about choices these days. Politicians keep telling us we can have choices for schools, dentists, GPs, etc. We want choices when it comes to pregnancy and family planning. We are told that it is our choice when it comes to our pregnancy, whether to continue or not (before the legal cut off), whether to have screening or not, what to do after screening, how and where we want to give birth, etc. That gives us a sense of we are in control but are we?

In this country, as in many other countries, it has become routine that we can opt for screening of a number of conditions. We feel that we can have more information and control. We think that we can make unbiased decision. However, has anyone actually questioned who decided which condition(s) to screen in the national screening programme and why these conditions are selected?

Of course, first and foremost, the screening test has to be feasible and reasonably accurate. But there are a lot of things that can be tested to a reasonable degree of accuracy and who decide which one to screen. Quite alarmingly in prenatal screening, I found a lack of ethical scrutiny and involvement of stakeholders in the process. The screening for Down Syndrome has been available in the NHS for a number of decades. However, it was started in an era that children of Down Syndrome were not expected to be educated, to be independent and get a job and were expected to require long term care. The aim of screening was to detect it so that termination can be offered. Should we still use the same ethical justification when new test (NIPT) is available?

I am not an advocate of euthanasia but I can understand the feelings of people living with debilitating conditions. Say if we legalize euthanasia and allow doctors to end the lives of patients with Alzheimer disease with consent of the patient or the next of kin if the patient cannot make consent. A lot of us perhaps will understand and accept it even we may not agree due to our own beliefs. Now if 20 years down the line, we find a cure for Alzheimer disease or if we find ways to halt its progression, will we still allow euthanasia for the condition? It is the same for prenatal diagnosis. One should always revisit the moral and ethical justification in light of the medical advances.

Unfortunately not only the ethical justification is never reviewed, its assessment also does not often involve people who are affected by the condition. As for now, the choice is a false one as it is the medical establishment who decides what to offer. So it is a bit like the election of Chief Executive in Hong Kong, the Chinese government decides who can stand and the public has to choose from that selection, which is invariably pro-China.