Some prenatal information–just to know–is unacceptable

Sign-InformationSo says Zuzana Deans, Angus Clarke  & Ainsley Newson in their article in the issue of Bioethics devoted to whether a new bioethics is needed for non-invasive prenatal screening. 

The January 2015 issue of the scholarly journal Bioethics is tackling whether non-invasive prenatal testing (NIPT) deserves a new ethical approach from traditional bioethics. Deans et al. address one of the aspects promised by NIPT: knowing a fetuses complete genetic make-up and in what circumstances testing “just to know” is ethical.

Ground rules

Deans et al. begin their examination with a couple of ground rules. Their analysis involves the following assumptions:

  • NIPT is diagnostic, not just a screening test;
  • NIPT can test for a range of genetic conditions, not the limited few that are currently recognized by professional organizations, i.e. more than just Trisomy 21 and 18; and,
  • Parents accepting NIPT intend to continue their pregnancies regardless of test results.

They propose five different scenarios where the parents are testing just to know whether their child has the following genetic conditions:

  1. Being a carrier for cystic fibrosis;
  2. Being shorter than average height;
  3. The baby’s sex;
  4. A serious late-onset condition like Huntington’s disease; and
  5. Whole genome sequencing as part of a research study.

So, with the grounds rules set and the scenarios in place, Deans et al. consider when testing “just to know” for the various conditions would be considered ethical.

Childhood vs Adult conditions & how it affects the child’s right to an “open” future

Deans et al. start with the existing ethical structure established by professional guidelines and commentaries concerning when it is ethical for testing for childhood conditions vs. adult-onset conditions.

It is commonly accepted as ethical to find out about conditions that can affect a child during childhood. It’s ethical because the child, not being competent, must rely on caregivers to help him or her. Testing to find out whether the child has a condition allows the child’s caregivers to prevent, treat, and minimize the effects of the condition. Referring to the first scenario, due to early therapy, the life expectancy for those with cystic fibrosis has grown because of childhood treatments.

Adult-onset conditions, however, do not allow for any treatment. Referring to scenario four, Huntington’s is a disease that remains latent until the person approaches 40 years old and then causes neuromuscular decline with adverse psychological effects and early death. Established guidelines state that testing for these conditions while the person is a child is unethical. It is unethical because nothing can be done to stop the condition and it intrudes on the child’s right to decide whether to find out on their own once they become competent. As Deans et al. put it:

finding out facts about an individual’s adult future is also often considered inappropriate as it delves into their (future) private sphere. Invading a competent adult’s privacy in order to improve their welfare is to exercise hard paternalism and is rarely justifiable.

Prenatal testing for childhood & adult genetic conditions

Deans et al. premise most of their analysis on testing “just to know” on the established guidelines for genetic testing of children for childhood and adult-onset disorders. They do so based on their ground rule that they are analyzing couples intending to continue their pregnancies regardless of the test result. As such:

In the case of a continuing pregnancy, the foetus is a future person, just as a child is a future adult.

Therefore, Deans et al. argue that the same guidelines discussed above for testing of children, apply to testing of fetuses: where the tested-for condition affects a child during childhood, testing just to know is defensible; but, testing for adult-onset conditions is unacceptable.

Frivolous conditions & the virtuous parent

Here’s where Deans et al. propose a new way of thinking prompted by NIPT.

Historically, prenatal testing has tested for a finite set of conditions, most of which are considered by professional guidelines as medically relevant, e.g. Down syndrome, Trisomy 18, cystic fibrosis, spina bifida. NIPT promises to test the entire fetal genome. Any condition can be tested-for, including those considered frivolous, like scenario 2 involving shorter than average height (though those who are shorter than average may dispute this is frivolous). What to do when parents want to test for these frivolous conditions?

Deans et al. propose the concept of “the virtuous parent.” I’ll quote the relevant paragraph in full:

A helpful approach might be to consider that of the ‘virtuous’ parent or perhaps a ‘virtuous counsellor’. While a detailed analysis of this concept is beyond the scope of this paper, relevant questions relate to the kind of parents that women and couples should aim to become (or the kind of professional someone practising in this area should be), what information couples require in order to be at least a ‘good (enough)’ parent, and what information is not required and might even be regarded as excessively intrusive? From a virtue-oriented perspective, there is no reason to distinguish actions of a parent or professional towards a future child from those towards a young child. There is no need to generate unhelpful information in the short term if that information might lead to harm or an invasion of privacy of the future child or adult. It is difficult to see any justification for generating such ‘trivial’ information from this perspective.

But why this prescription? Where’s the harm in “just wanting to know” whether your child will have blue eyes, be tall, have a shorter than typical thumb (as in the case of actress Megan Fox)? Dean et al. explain:

‘unnecessary’ testing in pregnancy may be regarded as troubling is because that it may objectify the foetus and resulting child. By making an effort to reveal certain traits, the expectant parents in several of the above clinical scenarios would be showing an inappropriately motivated interest in those traits, and in doing so would be expressing their views about what they valued. That expectant parents could value a non-serious characteristic of their foetus this much is, to some, distasteful.

* * *

Doing so is not harmful in itself, but it may be an expression or indication of an attitude that is not in keeping with a parent who values his or her child for who that child is, not the traits it will have.

The notion that prenatal testing risks commodifying children–turning them into “goods” that should be “quality checked” and not accepted if “defective”–has long been a part of the disability rights critique of prenatal testing. Prenatal testing risks justifying others judging a child born with a disability because the condition could have been tested-for and “prevented.” NIPT simply expands what conditions can be tested-for and possibly “prevented.”

Deans et al. are addressing another aspect of this same issue: what is the ethical use of prenatal testing by parents and practitioners. Testing for frivolous conditions risks the parents (and by extension society) not valuing the child for who that child is, but based on what traits the child has. Deans et al.’s remedy for preventing testing for frivolous conditions is to have the parents and their doctor reflect on how they want to be as parents and caregivers to this child.

My critique

Three points came to mind as I read Deans et al. article:

1.  Depending on the parents’ decision, prenatal information is either justifiable or unacceptable.

Deans et al. ground rules involve parents who intend to continue their pregnancy. With this basis, they render judgment that finding out prenatally for adult-onset conditions would be an invasion into their child’s future adult self and right to an open future. Therefore, Deans et al. conclude, information about adult-onset conditions should not be tested-for prenatally where the couple intends to continue because their fetus is a future person.

But do you see what that means in the opposite position?

What if the parents intend to terminate their pregnancy based on adult-onset conditions?

Deans et al. do not address this in their article, but it does demonstrate a certain capriciousness for what is considered “ethical” by their construct. If the parents intend to continue, then they should not be able to find out if their child has Huntington’s disease (or some other adult onset condition). But, if they intend to terminate, then, current bioethics about prenatal testing would counsel not only should they be able to find out prenatally, but find out with certainty.

Their ultimate recommendation, however, may address this critique of capriciousness.

2.  Virtue ethics applies to non-frivolous prenatal testing, too.

Deans et al.’s prescription for parents and practitioners to reflect on what kind of caregivers they want to be for the pregnancy should inform not just whether they test for frivolous conditions but non-frivolous conditions as well.

It seems from most academic commentaries on prenatal testing that they operate in an ideal setting, e.g. prenatal testing is ethically justifiable because it respects a woman’s right to autonomy, which encompasses gaining knowledge about her pregnancy. However, as detailed extensively in research studies and on this blog, in actual implementation, prenatal testing does not do this as universally as the academic theory requires for prenatal testing to be justified.

Similarly, I expect most academic commentators would think that doctors and parents alike enter prenatal testing with the kind of reflection that Dean et al. call for. Surely, from an ideal, theoretical setting, adults would think before making any decision why they were choosing to accept or decline prenatal testing. Except, we know from research studies, women’s experiences, and professional guidelines, that prenatal testing for Down syndrome happens often without the mother even knowing she accepted the testing and doctors are cautioned that prenatal testing should never be considered “routine,” precisely because that is how too many of them present prenatal testing to expectant women.

So, Deans et al.’s call for virtue ethics to be applied by parents and practitioners when considering prenatal testing should not be reserved just for whether they are testing for frivolous conditions. Rather, the rate of informed decision making would increase dramatically if both doctors and parents thought beforehand: what do we intend to do with this information and is it consistent with how we want to care for our child?

3.  Preserving the “giftedness” of children.

Deans et al.’s recognition that testing for frivolous conditions can risk accepting a child for simply being a child–an end, not a means to an end–is one that is echoed by the “Case for Conserving Disability.”

As stated at greater length at this post, the case can be made that children born with disabilities preserve the ability of parents and society to welcome children as they are, not regretting that they are not someway else. In a phrasing I particularly like, children with disability preserve the “giftedness” of children: accepting them as the gifts that they are (however they may be packaged, as eloquently written about by this mom).

Conclusion

Dean et al. actually are not proposing a new bioethics for prenatal testing prompted by NIPT. In truth, they are hearkening back to one of the oldest schools of thought on ethics: Aristotle’s Virtue Ethics. But, as covered in this post, just because it may be an existing school of bioethics thought, indeed one of the oldest, it shouldn’t be forgotten as prenatal testing advances. Instead, if parents and doctors reflected on who they wanted to be as parents and caregivers, then that may lead to a more judicious use of prenatal testing and an acceptance of their children for the gift that children are.

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