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Genetic screening and respect for persons

In this video, Ruth Macklin tackles the ethical challenges in screening in early pregnancy and the implications of testing for abnormalities.
Prenatal testing is a procedure that has been around for a long time in some forms. One of the earliest forms were in amniocentesis where some of the amniotic fluid is removed from the woman and tested to see whether or not the developing fetus has an abnormality. With greater knowledge of genetics today it is frequently for couples that may have a history of genetic disorders. They may choose to have an embryo. They create the embryo by in-vitro fertilisation and then the embryos can be tested using PGD for any defects and only healthy embryos then will be re-implanted or transferred to the woman’s uterus.
Some people object to this practice because what they argue is if this disability of some sort or a genetic defect is found that this sends a message to people living with disabilities that this is an undesirable condition. So there are debates about whether it disvalues people, living people with disabilities if in fact couples choose not to transfer an embryo that would have a similar disability, be it Down syndrome or some other activity.
My own view is that one should value living people with their disabilities and provide every avenue, both societal, monetary and every other way to enable them to live as closely as possible to able bodied people but it is understandable because of the burdens, both on parents and the more or less universal desire to have a healthy child, which most people want. So the key there is to do more for living people with disabilities while at the same time recognizing that the parents, given the ability to find out if the future child will have such a disability, their opportunity to choose.
Now there are some uses of PGD that are highly controversial and one of them is the use of this for sex determination or sex selection. This is prohibited in many places. It is prohibited in precisely those countries for example, China, that has a preference for boy children. However, people can have a preference, especially if they already have one child of one sex and want to have what is referred to as a ‘balanced family.’ So there is a professional organization in the United States that has agreed or that has approved of the use of sex selection in order to have ‘balanced families.’ Well, what would be an unbalanced family?
Suppose people have one girl and would want to have another girl because the mother says, “I never had a sister and I think my daughter who is now living, should have a sister.“ So the debate about this, is the worry that too many people are going to choose boy children over girl children, as in fact is true in India, in China and some other Asian countries. Is this something people should be able, voluntarily, to choose or does it say, as some people argue, does it say something about disvaluing the opposite sex?
This is one of the biggest controversies and the door is beginning to open, even though only the balanced family has been approved by this professional organization, and in the United States there are clinics that are beginning to offer, in response to people’s requests, not as an open offer to do sex selection. In my own centre where this is done the committee, the advisory ethics committee decided to look at this on a case-by-case basis. If the reason that the parents wanted to choose the sex of the child seemed to be an overwhelmingly good reason then the committee would advise in favour. But in the few cases that have occurred every reason seemed to be a good reason.
So the door is open and probably will be hard to close once it is opened.

Ruth Macklin tackles the ethical challenges in screening in early pregnancy, in particular the implications of testing for abnormalities and the potential message that sends to those living with such conditions.

For your discussion: At the end of the interview, Ruth Macklin describes the process of ethical approval in her institution. Do you think these issues can be assessed one a case-by-case basis? Or is a rule needed that applies to everyone?

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Making Babies in the 21st Century

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