Approach four: ‘It’s about information, knowledge and the public's involvement’

Who should have a say?

Most mothers in New Zealand undergo some pre-birth tests. These, together with ante natal care, have become a routine part of helping ensure the health of the baby and the mother. Most pregnancies progress without any problems being detected and the use of pre-birth testing has provided millions of women / parents with a sense of security concerning the future health of their children.

However, the outcomes are not always so straightforward. Pre-birth tests like blood tests, scans, amniocentesis or pre-implantation genetic diagnosis do sometimes detect conditions such as Down syndrome, cystic fibrosis and spina bifida. These conditions could have a devastating effect on the child and the parent(s).

Not everyone who finds out that there is a problem will choose to terminate the pregnancy. Supporters of approach four: “it’s about information, knowledge and the public’s involvement” believe that it is very important, whatever the outcomes of the test might be, that there is no pressure, intended or not, for women or parents to follow a particular course of action. For example, some people who find out that their baby will have Down syndrome choose to have the child; pre-birth testing gives them the opportunity to prepare for that child.

However, they also say more needs to be done to inform parents about pre-birth testing and this information needs input not just from health professionals but from women, parents and communities.

We all expect when we have a medical test, even a routine one, that the medical professional will get our consent. We also expect that we will be given information about any possible side effects, the accuracy of the test and what the possible courses of action might be if the test shows there is something wrong. In other words, knowing about the test helps us to make an informed choice whether or not to have it and what the implications might be. As the saying goes “knowledge is power”.

In order to make a choice once you have the results, you need more than just medical information. For example, most people have limited experience of what might be involved in caring for a person with a disability.

People need to know what is involved in looking after a child with a disability and what is available to support the family. Before making their decision they should have the opportunity to discuss all the implications with experts and also with parents who have cared for children with similar disabilities.

Supporters of approach four: ‘it’s about information, knowledge and the public’s involvement’ acknowledge that information regarding pre-birth testing is available from a variety of different sources. However, they think that not everyone gets the information they need.

Many women might have early tests, such as blood tests, without realising that the information from these might lead to decisions about further tests. Ultimately, they might have to decide whether or not to terminate a pregnancy. So it’s important that people are aware of the implications of routine tests.

As we discover more about genetics and are able to develop more tests, the range of decisions that parents have to make will increase.

Pre-birth testing is more than just science and technology

This approach involves more than just providing good medical information consistently throughout the country, although this is very important. Approach four maintains that information and knowledge about pre-birth testing can lead to complex, difficult and emotionally painful decisions. It’s important therefore to be in a position to take all the factors into account. The medical facts alone are not enough.

People favouring approach four want the government to ensure there is adequate funding to ensure that all women / parents have access to consistent, high-quality information and that there are enough well trained, experienced people available to answer any questions and concerns women / parents might have. These concerns may well go beyond medical issues.

Cultural issues

Too often ordinary people’s experience, knowledge and wisdom aren’t taken into account. Information may be written and delivered in a way that doesn’t take into consideration different cultures, languages and levels of understanding. For example, Māori, Pacific and Asian peoples have particular information needs and their communication needs may require specific knowledge.

From the perspective of approach four: “it’s about information, knowledge and the public’s involvement” important aspects that must be taken into account when thinking about pre-birth testing are:

• who is involved in developing the information
• how it is presented
• who presents it
• when the information is given.

Some people are concerned that current knowledge about pre-birth testing is dominated by the medical profession, fertility clinics and drug companies. This needs to be addressed by providing much greater public input into developing resources and information that meets people’s needs.

Trust

Some people question whether the advances in pre-birth testing are primarily intended to benefit families, or whether profit is the dominant motive. They say pre-birth testing is big business involving multi-national companies, the medical profession, fertility clinics and the research industry.

They say that people developing tests must work with members of the community to build trust so that the public is confident that the interests of families come first.

More tests, but no easy answers

Many more tests are being developed for detecting illnesses, diseases and disorders and as our knowledge of genetics is improving we can test for more genetic conditions.

Also improvements in ultrasound technology mean that we can detect more abnormalities. Despite these advances in testing, we cannot yet treat or cure many of these conditions.

The results from the tests are not always conclusive. Just because people carry a particular gene does not always mean that they will suffer from the condition. Even if they do suffer from the condition you cannot tell how severe the condition will be or when it will develop.

Some conditions, such as cancers, might be able to be treated, but the treatment is unpleasant and there is no guarantee of a cure. This uncertainty might put people in a very difficult situation when they are faced with deciding whether or not to continue with the pregnancy.

Into the future

More information might be available from testing in the future, and people might have to make even more difficult decisions. Many of us have heard the phrase ‘designer babies’, the idea that we might be able to ‘dial-up’ whatever kind of child we want. At present this isn’t scientifically or technically possible; you are stuck with the genes you inherit from your parents. However, in the future we might be able to modify embryos to choose certain features or characteristics, for example a child with blue eyes and dark hair who would be a world-class high jumper.

Should this ever be possible it might change our way of thinking about what it means to be human and have serious societal effects. Questions that affect all of us include who should make the decisions and whether or not we should move in this direction. Therefore, we all need to be fully informed about developments in this area. The concerns, interests and values of ordinary citizens need to be at the forefront of decision making.

What can be done?

• provide the same level of information and make it available throughout the country
• information about pre-birth testing needs to include the cultural, ethical and spiritual aspects of testing and its implications, as well as medical facts
• families and communities need to be involved in the development of information about pre-birth testing
• provide suitably trained people who are able to answer any questions and concerns about pre-birth testing
• ensure the public is involved early in the process of decision making and policy formation about future developments.

For and against the approach ‘information, knowledge and public involvement’

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