PRIVACY, PROCREATION, AND DYING:
Should The Law Permit A Woman Who Has The Gene For Early Onset Alzheimer's Disease To Have A Genetically-screened Child?

By SHERRY F. COLB

Wednesday, Mar. 13, 2002

The February 27th issue of JAMA - the Journal of the American Medical Association - reported a development in reproductive technology that has since caused significant, though undeserved, controversy. Although participants in the controversy have framed their arguments primarily in terms of medical ethics, the arguments have important legal implications.

According to JAMA, a woman - the story in JAMA understandably protects her anonymity, and I will call her Jane Doe - underwent implantation with an embryo that resulted when one of her eggs was fertilized with her husband's sperm. Prior to implantation, doctors screened the embryo to make sure it did not contain the gene for early onset Alzheimer's disease - which runs in Jane's family. Jane became pregnant and gave birth, and the baby, a girl, is now one and a half years old.

Jane's family's strain of early onset Alzheimer's disease often strikes in the prime of life - in a person's 30's or 40's. Jane's father died of the disease at 42, and it had already begun to afflict Jane's sister and brother in their mid-30's. Jane's daughter, having been genetically screened, will never get the disease, but Jane, who has the gene, eventually will. Jane, herself a geneticist, is currently 33 years old.

A number of commentators - including the authors of a joint commentary that appeared in the same issue of JAMA as the article describing the case - have expressed misgivings and moral outrage toward Jane Doe and the doctors who treated her. The writers condemn those who would bring a child into the world when her mother will become extremely sick in the next few years. Knowingly inflicting such suffering on a young child is cruel and selfish, they argue. Indeed, according to some, the law should ban the option outright.

This argument reflects an interventionist view of procreation that is utterly at odds with our nation's commitment to the fundamental right of privacy. Moreover, transforming this view into a legal ban, and imposing it on Jane Doe and other parents, would violate their Constitutional right to privacy.

The Constitutional Right to Procreate

In 1942, the Supreme Court held in Skinner v. Oklahoma that there is a fundamental right to procreate. There, a criminal defendant had been sentenced to sterilization after being convicted of stealing chickens.

He received this sentence pursuant to a statute that imposed the penalty on criminals convicted of two or more "felonies involving moral turpitude." Recidivists convicted of other crimes did not suffer sterilization, no matter how many felonies they committed.

The Court held that because procreation is a fundamental right, the State would have to invoke a compelling governmental interest in order to justify disparately denying exercise of that right to some, but not all, convicted recidivists. The State failed to offer such a justification, and the Court accordingly spared the defendant.

It ought perhaps to be self-evident that a woman who will die a terrible death at a young age is no less entitled to procreate than a man who has been convicted of several felonies. If Skinner had this right, so do Jane Doe and others like her.

Discrimination Just As Real, Though Less Obvious, Than That in Skinner

Imagine that a statute were passed prohibiting people such as Jane - those who know with certainty that they will soon die - from conceiving. Would that statute violate the fundamental right to procreate, based on the precedent of Skinner?

One might respond that Skinner would not apply to a ban on pregnancy for those who soon will die. In Skinner, Oklahoma had discriminated against the defendant by punishing certain recidivists and not others with sterilization. Importantly, under the Court's decision, it was not enough that a fundamental right was at stake; there was also discrimination among classes of persons.

Where, one might ask, is the discrimination in a ban against people like Jane having children? Certainly such parents are in a special situation, because unlike other parents, they know that they will soon die. But to take this fact into account is not to practice invidious discrimination, many would say; it is simply to allow the law to reflect a rational distinction between people who are differently situated in a highly relevant respect.

Though far more subtle than in Skinner, however, the discrimination here is nonetheless invidious - as it so often is when some people in the population identify others as unworthy of parenthood. It is discrimination between Jane Doe and the many people who are unlikely to become "good parents."

Jane Doe's Predicament

If you are inclined to judge Jane Doe, and believe she is truly different from other parents, first consider her predicament. Jane has tested positive for a gene that will likely cause her grave suffering and an early death. She knows what such a fate entails, because her father suffered it when she was much younger. Nonetheless, after agonizing with her husband over the decision, she decided to have a child.

If Jane could reverse the path of her journey toward illness, she certainly would. She may, for example, be on a regimen of one or more of the promising drugs that have been able to delay onset of the disease. She neither wants to die, nor does she wish for her daughter to lose a mother at such an early age. But some things are out of our hands, and Jane has no choice in this matter.

She does, however, have a choice about how to spend the remainder of her days. She can avoid close relationships to spare those around her from the pain of loss. Or she can live and celebrate every precious, lucid day that she has left. She has chosen the latter.

Thus, she has deliberately brought a healthy baby into the world - to whom she may give as much love in the next few years as many healthy parents give in a lifetime. She has faith that for her daughter, it will be better to have loved and lost than never to have loved at all.

Like all parents, Jane knows that she is not bringing her child into a perfect world, or ensuring for her a perfect life. Nevertheless, she has shown courage in having the child anyway - and the foresight to ensure that her daughter will never suffer from her disease.

Selfish or Selfless - and Do We Have the Right to Judge Only Certain Parents?

Allegations of cruelty nevertheless persist. One commentator spoke of Jane's decision to have a child as a "selfish act" - one that effects an unfair trade, "offer[ing] a woman several years of child-rearing that she will completely forget in exchange for the potential emotional devastation of a child."

It is this assessment, however, that is unfair - for it judges Jane too easily, and holds her to a standard that we do not apply to others. How many people agonize as she and her husband did over the decision whether to have a child, rather than just assuming that they will? And of those who do weigh the decision carefully, how many struggle over the best interests of that hypothetical child - rather than over their own hopes and dreams for the future, and how a child might fit in?

The reasons to reproduce are varied, but an important one is the desire to leave something behind when one is no longer here. How much greater must that feeling be in a woman who will be robbed of so much time on this earth that should rightfully have been hers?

People rarely ask themselves, "Will a child of mine suffer for having a parent like me?" Indeed, our society rarely encourages us even to ask this question.

When one thinks of the many persons whose childbearing choices others, from the outside, might question, it becomes clear that Jane's predicament, while extreme, is actually a common one. Jane has knowledge about herself - that she will die young - which will affect her child, too. But many other parents know that they have limitations that may affect their ability to care for children and they, like Jane, are nevertheless hopeful enough to try their best.

Our courts have ranked the right to procreate as a fundamental constitutional entitlement. It is an entitlement that necessarily implicates the lives of people other than those who possess the right - namely, children. Yet the contours of the right have never turned, nor should they turn, on the life circumstances of those exercising it.

A Legal Result with Moral Consequences

None of us is in a position to judge whether a human being born in a particular situation would have been better off never existing in the first place. Jane Doe undoubtedly acted out of love. Rather than passing judgment on her choice, let us strive to make this world a place where every child is as wanted and loved as the child born to her under these tragic circumstances.


Sherry F. Colb, a FindLaw columnist, is a Visiting Professor at the University of Pennsylvia Law School, and a Professor at Rutgers Law School in Newark. Her other articles on reproductive rights and privacy issues, among other topics, may be found in the archive of her columns on this site.

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