Reproductive selection bias.

Author:Roth, Lauren R.
 
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Abstract

Decades after the advent of assisted reproductive technology ("ART") that allows prospective parents to deselect embryos with grave genetic illnesses--a procedure called preimplantation genetic diagnosis ("PGD")--it remains a tool largely of upper-class whites. I argue that the time has come to focus on closing the access gap in this area of reproductive rights in spite of the current political climate. If reproductive liberty is tied to equality through access to medical procedures, scholars must finally answer the question of what equality requires in a system that permits the use of ARTs.

This Article shows how the current system of assisted reproduction already distinguishes between the "in" group and the "out" group. Section I explores the literature's focus on the use and growth of PGD for genetic selection unrelated to the prevention of genetic disease ("nontherapeutic PGD"), including the use of PGD for sex and other physical-trait selection. The scholarly overemphasis on tricky moral quandaries associated with the nontherapeutic use of PGD where liberty concerns are at the forefront impedes any proposed solutions to unequal access to using PGD to prevent inherited illnesses.

Section II similarly explores how existing jurisprudence ignores the role of income inequality and broader social concerns when deciding disputes related to PGD. Courts address any negative implications of their decisions for the children of those who are able to afford PGD but fail to address the impact of their decisions on the children of those who cannot afford PGD.

Finally, I discuss in Section III how the combined effect of the Affordable Care Act ("ACA") antidiscrimination and essential health benefit mandates is to focus on ensuring equality of access to healthcare, particularly for underserved populations. While few scholars would argue today that reproductive technology is likely to be included among the essential health benefits the ACA requires, if the statute remains intact, it is one more example of the troublesome class distinctions that currently divide this country into "haves" and "have nots." The reverse eugenics of therapeutic PGD privileges wealthy whites above other races and classes, and it exacerbates race and class distinctions.

Contents Introduction I. Using PGD to Select Babies A. The Tension Between Liberty and Equality B. Liberty for the Disabled II. PGD and the Courts A. Tort Law B. Family Law III. Access for "Other Groups" A. A Positive Right under the ACA 1. Antidiscrimination 2. Essential Health Benefits B. Lack of Access as Eugenics Conclusion Introduction

There are many goods and services that the poor cannot afford to buy. From decent housing to luxury cars, from new clothes to vacations at the beach, their unmet needs and wants are extensive. Through direct subsidies and indirect tax credits and deductions, society tries to fill some of these unmet needs. Grudgingly or not, completely or not, government programs tackle needs including housing, food, and healthcare.

Given that few would argue that the government is fully meeting these basic needs, it is unsurprising that there is currently no public funding for advanced fertility treatments for the poor. But this is a case where a negative right against government interference in family planning should become a positive right to funding to create "healthy" children. (1) An example can help demonstrate why we should be funding fertility treatments instead of--or, ideally, in addition to--investing more in housing or education.

Two couples, (2) the Bakers and the Smiths, are looking to conceive a child and have an observed family history of Huntington's disease. At the start, the disease is as prevalent among wealthy families and among poor families. Without any additional action, they face the same risk of passing the gene for the disease to their offspring. Unfortunately, genetic testing reveals that Mother Baker carries the gene and will, absent medical intervention, face a fifty-percent risk of passing that gene and the disease itself along to her offspring because Huntington's is a dominant gene. (3) Mother Smith also carries the Huntington's gene and bears the same risk of passing along the gene to her children, but she is poor and, therefore, less likely to engage in genetic testing and discover this fact. (4)

Even assuming that both families know enough about their history and about the disease to have genetic testing done, (5) they face very different paths forward in conceiving biological children. Although Mother Baker has no known fertility problems, she can use in vitro fertilization ("IVF") to produce embryos that will then undergo preimplantation genetic diagnosis ("PGD"). With PGD, a single cell (typically) is taken from each embryo in a biopsy and tested to see if its DNA contains the gene for the disease. (6) By selecting embryos without the gene--absent the small risk of human error or other reasons for mistakenly implanting an embryo that contains the gene for the disease--the Baker family now has a healthy baby with no risk of developing Huntington's disease.

The Baker family has spent a lot of money to ensure that Baby Baker is healthy, though. (7) For that price, the Bakers no longer have to worry about their children or their grandchildren inheriting the disease. They also save the money needed to treat the disease and care for family members with the disease. Although Mother Baker will one day live with Huntington's disease, future Baker generations will not, and they will have no reason to lobby for research into treatments for the disease, to donate to related charities, or even to walk in the annual event to show solidarity with others affected by the disease. The market for future treatments will be a little smaller by number and a lot less profitable, assuming that those most likely to pay for expensive new treatments will no longer have the disease. (8)

If, instead, all members of the two couples here are carriers of cystic fibrosis ("CF"), which allows two healthy carriers to each pass a recessive CF gene to a child to produce a child with CF, the Baker family can use IVF and PGD to nearly eliminate its risk of passing CF to its offspring. The Baker family removes itself from the CF population quickly and provides no attention or funding to the cause going forward.

The Smith family, on the other hand, faces a difficult choice. The couple is determined to have biological children but cannot afford the cost of IVF, let alone the cost of IVF and PGD. (9) Depending on insurance and other resources, the Smith family can conceive naturally and then test the fetus for Huntington's disease via amniocentesis. Assuming the family can afford this procedure, however, any positive test result would require terminating the pregnancy if the family does not want to pass on the disease. For the Smith family, producing a child without the gene might entail several failed pregnancies.

If the Smith family conceives and does not test for the Huntington's gene using amniocentesis, then they have a fifty-percent chance of passing the gene to each of their children. Since the Baker family opted out of the disease, the Smith family now--or within a few generations, at least--faces a world in which the wealthy do not have the disease and therefore do not spend to research the disease and treatments or cures. Among the population that was previously equally at risk for developing Huntington's disease, wealthy people now have "healthy" babies who will never develop the disease, and poor people have "sick" babies who have a fifty percent chance of inheriting the disease. (10)

In this Article, I argue that there should be a positive right to the funding of fertility treatments for parents with genes that can reduce their children's life expectancy or greatly impair their quality of life. If, at the very moment of birth, poor children and wealthy children are not equal because money can buy different genetic coding for length and quality of life, then there is no hope of equality at any point thereafter. If there is no equality at this one moment, then there is no liberty for the poor children who start life with a stigma that the wealthy can avoid. While line drawing is always difficult and there is a slippery slope, a negative right should become a positive right when it is necessary to create all babies equal.

Two decades after the advent of the technology that allows us to screen out certain genetic diseases--at a time when its use is growing--we stand at the precipice of a dramatic increase in social inequalities as a result. At this point, we all recognize the importance (politically, if not ethically) of reducing social inequality in this country. Scholars advocating for reproductive liberty, or procreative liberty, as it is frequently called, have focused on reproductive choice and allowing some to use assisted reproductive technologies ("ARTs"). (11) Yet asserting that ARTs are morally justified and should be legally permitted does not address the disparity in utilization rates between classes and races. (12)

Scholars, particularly Dorothy Roberts and Radhika Rao, have sought to advance equality in reproductive liberty, but questioned at times whether ARTs should instead be prohibited for all and genetic parentage deemphasized. (13) I assume here, given the popularity of ARTs among those who can afford to use them (largely wealthy whites), that it is unrealistic to ban or substantially limit their use in the case of preventing genetic diseases in offspring. If liberty is tied to equality, scholars must finally answer the question of what equality requires in a system that permits the use of ARTs.

I propose that we move beyond the current discussions of morality and legality of new ARTs because existing technology shows that we cannot achieve reproductive equality without a positive right to government funding...

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