How Ought Decisions That Weigh on Life and Death Be Justly Informed and Governed to Benefit More than the Privileged Few with Access to a Trusted Clinician?


Julia E. H. Brown, PhD and Barbara A. Koenig, PhD

Publish date

Topic(s): Editorial-AJOB

The following is an editorial in the February issue of the American Journal of Bioethics. You can find the issue here:

The two target articles in this issue bring into focus the struggle for governance over biomedical interventions that may offer some families more agency—the capacity to act—in the context of many unknowns in life’s beginnings and ends. Bayefsky and Berkman (2021) consider expanded prenatal genetic testing (ePGT) in the United States, making a case for professional medical societies, as opposed to the government, taking on regulatory responsibility insofar as permitting “unrestricted access to fetal genetic information that is useful for parental actions in the short-term,” namely “with direct bearing on the decision to terminate a pregnancy.” Echoing this prioritizing of individual choice and freedom, Florijn (2022) considers the debate about assisted dying in the Netherlands, where clinician control over the process is under challenge, as Dutch citizens advocate for more “self-determination” and “negative patient autonomy” over assisted dying. Current practice requires the involvement of a physician who attests to the patient’s suffering. Taking the legal case of a non-physician who helped prepare a fatal dose of medication that his 98-year-old mother consumed because she was “tired of life,” Florijn argues that the Dutch Euthanasia Act runs on an unsustainable ideal of shared decision-making between physicians and patients. Decision-making in reproductive and end-of-life contexts might be ideally informed by strong clinical relationships, however ensuring access to these relationships is difficult even in societies where healthcare is considered a human right.

In this editorial, we suggest that focusing on what the privileged few can access through established clinical relationships is a vital bedrock, but one that obscures the greater dilemma of societal and equity interests that cannot be addressed through clinical governance. Both articles interrogate the role of expert clinicians in mediating access to information relative to personal decisions. The proposed regime of oversight of prenatal genetic information, along with the current Dutch euthanasia practices, argue against the idea that a list of options can be provided to individuals who make direct, fully autonomous decisions. Indeed, some decisions are too complex for the medical marketplace; we need a system that avoids turning patients into customers who select from a menu of options. Moreover, a pure choice model undermines concerns about equity and the need for stronger societal oversight. Addressing these concerns would ensure that longer-term consequences do not include a widening of health disparities or heightened disadvantage of already marginalized groups. Bayefsky and Berkman explicitly dismiss “justice concerns,” insofar as lack of universal healthcare coverage in “this [American] two-tiered system is the price we must pay for rejecting a ban on certain kinds of prenatal testing”—all the while acknowledging the need for societal input “before commercial marketing establishes norms on our behalf.” We certainly do not want commercial interests to be the sole arbiter of decisions that should be societal. Yet it is underrepresented groups who currently bear the greater burden of uncertainty when, as both authors assert, the exercise of autonomy relies on shared decision-making within a clinical setting.

To first examine prenatal decision-making, there is a need to acknowledge the broader, inequitable playing field as it exists. Legal frameworks in the U.S. are currently unable to offer sufficient protection because clinically relevant information is widely accessible for purchase, with steep socioeconomic gradients in access. As Bayefsky and Berkman highlight, noninvasive prenatal testing (NIPT) and fetal genomic sequencing are already available through private companies for those who can pay for it. Given that the “therapeutic odyssey” of seeking answers to undiagnosed pediatric conditions often happens outside of the clinic (Childerhose et al. 2021), and the potential sequencing for any kind of human trait unaided by any indication—as Bayefsky and Berkman caution—it is hard to imagine a different path for prenatal healthcare that is even more subject to private resources than pediatric contexts. The FDA can delegitimize but not prevent biotechnologies from becoming available for purchase—and, as the COVID-19 pandemic has illustrated, trust in the FDA and other government institutions’ advice is fraught. As Dive et al. (2022) point out, ideally it is the state that would regulate and protect public interests. Yet we also know that the government does not have a good history of doing this, and “top-down” approaches fail to engage community interests. This is especially the case in the U.S., where forced sterilization policies targeted the already marginalized, reinforcing systemic racism, sexism and ableism in particular.

When considering the right to information, Bayefsky and Berkman could have also considered the downstream effects on who bears the greatest burden when, with more and more uncertain information, parents will, at best, be pursuing a pregnancy while tolerating ever increasing knowledge of genetic risks. If parents are from groups under-represented in genetic databases, the results will be even less reliable to use as predictive markers for genetic disease. While clinicians should promote transparency about these failings, clinicians acting individually cannot resolve social inclusion or access concerns. Optimal shared decision-making in every case cannot resolve systemic injustice.

There is an overwhelming focus on how reproductive autonomy operates between parents and clinicians, and how this may be impacted by such factors as excessive and potentially inaccurate information—rather than through the realities of social capital. A more careful reading would consider reproductive justice, wherein reproductive healthcare constitutes a human right and cannot be traded as a commodity. So-called reproductive “choices” following test results are contingent on social and structural supports (Rothman 1985; Ravitsky et al. 2021). If the full breadth of prenatal healthcare, including the option of pregnancy termination, is not available to all parents in the U.S., it is unjust to offer prenatal diagnostic information that only some parents (and clinicians) can use to guide decision-making (Ballantyne et al. 2009). Related to access to prenatal information, there is also a need to reckon with the legal prioritization of fetuses as persons to be protected over and above the welfare of children once born, or pregnant people of color who face systemic racism excluding them from prenatal care (Ross & Solinger 2017). Moreover, while Bayefsky and Berkman note a need to “look more broadly to social circumstances that are constraining their [parents’] decisions,” the implications of “choice” are only considered in terms of having a child with a disability and in a way that is disconnected from any potential remedy for social injustices: “it is reasonable for parents to decide that given their life goals, financial and other constraints, they would prefer not to have a child with a disability.” As Michie and Allyse (2022) assert, this conclusion stems from empirical research documenting the views of “highly privileged populations.” Social circumstances matter in determining what information is “serious” enough to act on (Kleiderman et al. 2022; Rapp 1999). Bayefsky and Berkman place the onus on “physician integrity” to ensure that social values about diversity are part of any conversation about disability. Yet such conversations, under the guise of “shared decision-making” between clinician and patients, can only happen in an equitable way if access to community supports are available to promote social inclusion beyond the clinic (Mintz & Magnus 2021).

Turning to the other end of life, it is insufficient to only talk about the importance of improving the “deliberative model” of decision-making between patients and clinicians to maximize patient autonomy. Even in societies like the Netherlands where healthcare is available to all, relational autonomy between patients and clinicians is idealistic and inconsistent in terms of variation in trust and communication between different providers (Kouwenhoven et al. 2019). What Florijn describes as the “mutual responsibilities in the decision-making process,” and the need for flexibility in how much “an individual is entitled to decide at what point, and by what means” their life should be terminated, depends on a strong patient-clinical relationship (beyond access to a provider) being equally available to all. Moreover, the very notion of this trusted social contract existing for all will shape societal aspirations beyond settings like the Netherlands, and so we need to think about the unequal world in which these norms operate.

The fact that it is increasingly difficult to mitigate against medical market interests is not a reason to be resigned to societal injustices and inclined toward improving autonomy for those who can afford more of it. Perhaps, in the same way that Michel Foucault’s theoretical attention to “governmentality” and “biopolitics”—the ways that knowledge and interventions become social engines for normalization—may sidestep issues of political and moral implications such as inequalities, it is critical here to consider how regulations around life and death “differentiate” citizens along the lines of access, where not all individuals are socially empowered enough to pursue the biomedical technologies in question (Fassin 2009). A failure to consider governance needs regarding downstream consequences for social (in)justice will be highly consequential.

To dwell on the longer-term implications, then, we also need to ask: How does society avoid a “backdoor” descent into eugenics, chartered by the privileged few invested in reproductive decision-making? Likewise, can we avoid the emergence of a moral duty to die at a certain age, a duty that is shaped by the interests of those privileged few who are simply “tired of life” rather than grappling with poor access to basic healthcare? To explore these questions, it is vital to move beyond privileging patient choice. We need to interrogate how new social practices and biopolitics promote, or fail to promote, broad societal interests, and which governance mechanisms will promote justice. It is imperative to locate autonomy within patient-clinician relationships that are available to all.

Julia E. H. Brown, PhD (@juliaehbrown) is a postdoctoral scholar in Bioethics and Innovative Technologies at the University of California, San Francisco and a postdoctoral affiliate at the Centre for Global Mental Health, University of California, San Diego.

Barbara A. Koenig, PhD (@BarbaraAKoenig1) is a professor and Director of the Program of Bioethics at the University of California, San Francisco.

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