When Martha and John learned that their unborn son had Down’s syndrome, they chose to continue the pregnancy despite “prejudice of the . . . medical community” against intellectual disability (ID). At one point her obstetrician advised, “I think it’s time to let us take care of it for you.” Martha refused—the doctor persisted—Martha held her ground. But, she says, “it is difficult to convey the fear and despair I felt as the weight of [his] disapproval bore down on me.” This physician was not alone: “most . . . of the doctors I would interact with [during] my pregnancy disagreed with my decision [and] considered it wiser to do away with the baby” (Beck 1999, 218–223).

Martha’s story, while anecdotal and older evidence of medical attitudes to ID, is neither unique nor dated. Hyunkyung Choi et al.’ 2012 meta-analysis finds that many healthcare professionals who advise couples following prenatal diagnosis of Down’s syndrome lack the expertise needed to provide appropriate counselling. In Briana Nelson Goff’s 2013 research, a majority of parents report negative experiences with clinicians who insist on terminating the pregnancy and perpetuate negative stereotypes of people with ID. Stephanie Meredith’s 2016 study confirms that physicians who work with pregnant women are often not sufficiently trained to advise them regarding selective abortion (SA). Call this the problem of inadequate disability counselling. The concerns are that clinicians are unaware of relevant information regarding ID (or if aware, do not share it properly with parents).

Today most pregnancies are screened for genetic and chromosomal disorders. When tests are positive for conditions like Down’s syndrome, most parents terminate. (I discuss selective abortion—but disability elimination also takes the form of IVF, preimplantation diagnosis, and embryo selection.) A common reason for SA is beliefs about quality of life for the child. In a previous paper I (Gould 2019) discuss prospective parents whose SA decisions often involve a failure of epistemic virtue (they do not investigate what ID would actually mean for their child). In this paper I analyse medical professionals whose disability counselling often involves a failure of intellectual duty—they are culpably ignorant about ID (or do not disclose known facts to parents). My line of argument evolves in several steps. First, I explain why a standard motivation for SA is flawed. Second, I summarize recent research on parent experience with prenatal professionals. Third, I outline the notions of epistemic excellence and deficiency. Fourth, I defend culpable ignorance as the best explanation of inadequate disability counselling. Fifth, I rebut alternative explanations. My focus is pregnancies diagnosed with mild or moderate ID.

Why a Standard Motivation for Selective Abortion is Problematic

There are many reasons for SA after fetal diagnosis, but I assess one particular rationale—to prevent child harm. Martha’s doctor’s advice was based, at least in part, on her unborn son’s welfare—on a negative evaluation of ID and quality of life. (In addition to harm-prevention, Martha’s doctor may have had a parent-centred reason (preventing emotional and financial burden to them), self-serving motives (fear of a malpractice wrongful life lawsuit), and an economic rationale (reducing tax-funded costs of disability care). See Boss (1993).)

The Harm Rationale for Selective Abortion

The Harm Rationale assumes that reproduction should prevent harm and promote a child’s best interest by protecting them from a compromised life. The Harm Rationale also assumes that people with ID are harmed by being born. ID is thought to be tragic—affected individuals lack good prospects for a worthwhile and happy life (since they cannot live independently, engage in typical activities, or enjoy normal relationships). Impairment means poor quality of life, one of limited opportunities and significant frustration or suffering.

Why the Harm Rationale is Questionable

Key questions in the Harm Rationale are how harm is defined and whether people with ID experience harm by being born.

First, in conceptualizing reproductive harm, I assume that the standard criterion of harm is personal: there is someone who is made worse off or placed in a bad state. Harm is not impersonal—it does not concern overall well-being in the world (Kaposy 2018). Second, I assume that reproductive choice need only prevent severe or avoidable harm. Reproductive harm comes in degrees: mild and moderate ID is compatible with a good life, but profound ID—very low functioning individuals who remain permanently infantile—impacts more seriously the possibility of flourishing. (Eva Feder Kittay (2019) contends that most profoundly disabled people, like her daughter Sesha, can be involved in activities and relationships.)

Martha’s son Adam would be harmed only if his ID is severe or avoidable. In fact, he is harmed in neither way.

  1. 1.

    People with mild or moderate ID do not experience severe harm. A substantial body of social science data indicates that people with disabilities, including ID, are as happy, on average, as those who do not have disabilities. Brian Skotko’s (2011) research finds that 99 per cent of people with Down’s syndrome like Adam are happy with their lives. Pekka Louhiala (2004) and the essays in Disability and the Good Human Life (Bickenbach, Felder, and Schmitz 2014) deny that ID ruins prospects for flourishing.

  2. 2.

    People with ID do not experience avoidable harm. Someone can only be made worse off if there is a situation where they could be better off. In Adam’s case there is no such option—the only choices for him are life with ID or non-existence. There is no scenario in which he, the same person, could be born without Down’s syndrome.

David Wasserman (2005, 137) would tell clinicians that “it is hard to accept the claim that the very creation of a child with a worthwhile life and a significant but unavoidable impairment” harms it. Martha’s medical team cannot recommend SA for Adam’s sake—since for him a good but disabled life is preferable to no life at all.

Wasserman (2015, 234) notes that “the vast majority of diagnosable impairments are neither lethal in early childhood nor . . . capacity-limiting” to an extreme degree—instead, individuals with these conditions can live good lives. The Harm Rationale, then, does not justify the majority of SA decisions. Yet most parents who receive a diagnosis of ID terminate; according to the American College of Obstetricians and Gynecologists (ACOG), 85 to 90 per cent of pregnancies indicating Down’s syndrome are ended (Cleary-Goldman et al. 2006).Footnote 1 There is a stark contrast between the facts that (a) most people with ID have worthwhile lives and (b) most SA targets conditions compatible with a good life.

If the Harm Rationale seldom justifies SA, then why is it believed true and conveyed to parents by medical specialists like Martha’s doctors? The answer, I argue, is a failure of intellectual virtue. They are not conscientious in knowing the life prospects of individuals with ID (or, perhaps, fail to share positive information which they do know). My argument is an inference to the best explanation.

The Problem of Inadequate Disability Counselling

In trying to decide whether to continue or end a pregnancy, parents like Martha and John rely on advice from medical personnel. “The purpose of informed consent,” Charles Junkerman and David Schiedermayer (1998, 13–14) state, “is to provide the patient with all of the information necessary to allow a reasonable person to make a prudent choice.” Albert Jonsen (2006, 58–59) adds that the clinician “has an ethical obligation to make reasonable efforts to ensure comprehension”—especially in the face of denial, fear, and misunderstanding.

Patients, Leon Kass (1999, 35) points out, are subject to the “tyranny of expertise. Every expert knows how easy it is to get most people to choose one way rather than another simply by the way one raises the questions, describes the prognosis and presents the options.” Wasserman (2015, 233) sees this in reproductive medicine: “conveying the expectation that [they] will terminate if the result is positive may make it difficult for pregnant women to continue a pregnancy, especially if the result is accompanied by one-sided information about disability.” Since clinicians “occupy an authoritative position,” Annette Patterson and Martha Satz (2002, 120) say, “the definition they present becomes a frame of reference for parental decision-making.”

People who counsel others are responsible for knowing and telling the truth. The importance of truth-telling, Tim Scanlon (1998) notes, is a function of two factors: (a) what is at stake for the hearer—their interest in being properly informed—and (b) what special obligations the speaker has to communicate honestly. Proper information is important to parents: SA often has a traumatic psychological impact—because the pregnancy is desired, terminating this wanted child differs from aborting any unwanted child. (SA is a difficult decision accompanied by anxiety, sadness, anger, and guilt. Joann Galst [2015, 288] notes that “receiving a diagnosis of serious fetal anomaly and a subsequent decision to terminate are traumatic. Initially, parents may react with acute post-traumatic stress and later suffer from post-traumatic stress disorder, depression, and/or persistent complex bereavement disorder.”) And so clinicians are held to a high truth standard that involves three duties: (a) not to lie, (b) not to mislead by stating half-truths, withholding information, or conveying false impressions, and (c) to provide accurate and complete information. When facts are uncertain or contested and where experts disagree about how to proceed, these ambiguities should be acknowledged (Jonsen, Siegler, and Winslade 2006).

There are many fine professionals who convey proper information. Yet many are like Martha’s doctor. Only 28 per cent of ACOG fellows say they are well-qualified to provide genetic counselling—45 per cent feel their training regarding prenatal diagnosis is barely adequate or non-existent (Cleary-Goldman et al. 2006). Research across thirty years indicates that many professionals lack the expertise to deliver a diagnosis of ID—and they can be highly directive rather than neutral. They often use negative language and communicate outdated, rather than accurate and balanced, information to parents. Many have limited exposure to individuals with ID and hold negative views of life with ID —this distorts the facts they give, which many parents feel is slanted to encourage SA. Parents were commonly presented with worst-case scenarios and one-sided statistics that describe the problems but not the potential of people with ID. They were not directed to parents or support groups who could help them understand what life with ID is like, nor were they given sufficient time to think their decision through.Footnote 2

Wasserman (2015, 233) summarizes: research “raises serious questions about whether consent to prenatal testing and selective abortion can be regarded as truly informed and voluntary.” Judith McCoyd (2015, 273) agrees: “many women have reported dissatisfaction with genetic counselors and physicians who strongly encourage termination after the finding of an anomaly.” The process, Wasserman (2015, 229–230) explains, “(a) leaves inadequate opportunity for reflection about whether to test and how to respond to the results; (b) is biased in its presentation of the diagnosed conditions; and (c) treats termination as the default option for ‘positive’ results.” These “concerns about informed consent and misinformation are widely shared.” Both those who oppose and those who support SA “believe that such important decisions should be made without pressure, with accurate and balanced information, and with adequate opportunity for counselling and reflection.” This is what Martha’s doctor should have provided. And he is not alone in his mistreatment of parents—inadequate disability counselling is a common and current problem.

The problem of inadequate disability counselling consists of two failures. Many professionals are culpably ignorant—they fail to know important facts, and so misunderstand ID and pass on the Harm Rationale uncontested. In addition, some professionals are dishonest—they know accurate information about ID but do not disclose it to parents.

Defining Epistemic Excellence and Deficiency

Before arguing that inadequate disability counselling often involves culpable ignorance, I offer a brief account of epistemic excellence and deficiency.

The Ethics of Belief

Beliefs are the basis of all practical decisions, Louis Pojman (1995, 256 and 297) says,

… and the importance of having accurate beliefs can largely be explained in terms of this action-guiding aspect . . . . Since truth matters, and we can take steps to acquire habits making true beliefs more likely, there is an ethics of belief …

—a moral responsibility to know the truth.

Because actions follow naturally from beliefs, Lorraine Code (1987, 69 and 73) says, ethical and epistemic considerations are intertwined. “Each time a moral judgment is made two parts of a situation must be assessed: the way it is apprehended and the action that is performed as a result.” The owner of a ship is justified in sailing it only if he has done his best to determine that it is seaworthy. Suppose he denies his doubts of its safety and sends it to sea, where it sinks with loss of life. In order to blame his action, we must hold him responsible both for the belief that led to it and for the method by which he acquired that belief. The duty to have true beliefs entails the duty to gather evidence to the best of one’s ability through careful inquiry. If investigation is defective, then a person has no right to believe or act on their belief. (On the ethics of belief see Chignell 2018).

Intellectual Virtue

Epistemic virtues help us meet our epistemic duties. Intellectual virtues—like being open-minded and paying attention to evidence—are dispositions to think well that enable us to obtain warranted beliefs. Intellectual vices—like hasty generalizing and attending selectively to evidence—are bad mental habits that cause us to hold faulty beliefs.

James Montmarquet (1993) identifies the primary intellectual virtue as conscientiousness—caring about truth and doing all we can to learn it. The secondary intellectual virtues of inquiry enable the pursuit of truth. Sobriety, for example, is the commitment to only believe what is justified by careful investigation and to not accept emotionally-appealing or socially-popular attitudes—and courage is a willingness to fairly examine alternatives to cherished assumptions. While inquiry happens individually, we also seek truth collaboratively. Modesty is the willingness to acknowledge what we do not know and to learn from others who are better informed on particular topics. (On intellectual virtue see Greco and Turri 2017).

Culpable Ignorance

William FitzPatrick (2008, 593 and 609) points out that when “an agent does something bad, either he does so in full knowledge that he shouldn’t be doing it . . . or he is acting from ignorance.” In the first case, the person is responsible—they do know of relevant information and do not act in ignorance. This includes both (a) what they actually know as well as (b) what they would know apart from wilful blindness. In the second case, “whether he is responsible or not will depend on whether or not his ignorance is culpable. But his ignorance will be culpable only if he is responsible for some earlier failure that gave rise to that ignorance.” Ignorance,

… is culpable if the agent could reasonably be expected to take measures that would have corrected or avoided it, given his or her capabilities and the opportunities provided by the social context, but failed to so . . . due to the culpable . . . exercise of such vices as overconfidence, arrogance, dismissiveness, laziness, dogmatism, incuriosity. (609)

The person should know of relevant information, and they are responsible since the actions or omissions which produce ignorance result from intellectual vices.

Rene van Woudenberg (2009, 377) elaborates. The culpably ignorant person

  1. 1.

    should have known better (certain individuals, like clinicians, are in positions that require them to know particular things as a matter of duty—they have obligations of epistemic vigilance, to acquire beliefs with care) and

  2. 2.

    could have known better. Individuals can indirectly control their beliefs by controlling the process by which they form them. They have the abilities necessary for obtaining accurate information but fail to utilize them properly.

A person does wrong deliberately when they act with clear knowledge. They do wrong negligently when they act through culpable ignorance—when they do not acquire knowledge they should have. (On the epistemic conditions of moral responsibility see Rudy-Hiller 2018). With this background in place, I turn to consider disability counselling.

Culpable Ignorance as the Best Explanation of Inadequate Disability Counselling

There are four possible explanations for why many professionals convey inadequate post-diagnosis information to parents.

  1. 1.

    They do so in full knowledge (i.e. completely aware that the Harm Rationale is contested and that their counsel is inadequate).

  2. 2.

    They do so in innocent mistake (i.e. not knowing of the discrepancy between disability and medical perspectives on quality of life with ID and the Harm Rationale).

  3. 3.

    They do so with justified scepticism (i.e. while aware of the disability perspective on SA and the Harm Rationale, they are unconvinced by it).

  4. 4.

    They do so in culpable ignorance (i.e. having neglected to inquire properly, they do not have sufficient information about ID).

The final explanation is most likely—as Wasserman (2015, 234) states, “health professionals who offer prenatal diagnosis . . . generally lack adequate information about life with any of the conditions for which testing has been done.” While clinicians convey misinformation unknowingly, this ignorance is culpable. It is due to intellectual vice—a failure to inquire diligently about the Harm Rationale and the well-being of people with ID. (There may be a fifth explanation: they do so in partial knowledge. There is “the possibility of having knowledge in a sense and yet not having it,” Aristotle [1980, 1147a18, 165] says. Professionals may know accurate information about ID but lack adequate understanding of ID.)

Why Clinicians are Ignorant About Disability

The Harm Rationale for SA, I have argued, is unwarranted. Wasserman (2015, 234–235) agrees: “most research on the well-being of people with disabilities relies on self-reports, and those reports do not confirm the grim views of third parties” like Martha’s medical team. And yet “many health professionals … believe that being born with a disability is almost always damaging and often disastrous for the child.” This gap between professional perception and disability reality requires explanation.

“Prenatal genetic testing followed by selective abortion,” Erik Parens and Adrienne Asch (2000, 5) contend, “is driven by misinformation.” According to the sociology of knowledge, belief systems do not belong to just one individual but are socially shared. Most people do not decide what to think by logically examining opposing ideas; instead, they believe what their families, friends, and peers do. Social networks can spread both true and false information—think of vaccine sceptics. Instead of constructing their beliefs by careful investigation, many clinicians absorb misinformation concerning ID from social and professional communities of belief. (On social epistemology see Goldman and Blanchard 2015).

Clinicians absorb social misinformation from popular but simplistic assumptions concerning the kind of life a person has with ID. They internalize the personal tragedy model which conflates ID with suffering and poor quality of life. They unconsciously accept ableism—defined by Tobin Siebers (2008, 4) as “the widespread belief that having an able body and mind determines whether one is a quality human being” with a quality life. They also internalize an essentialist medical view of ID (that disadvantages are inherent in impaired minds) rather than a constructionist social view (that difficulties reside, at least partly, in non-accommodating environments). As Anne Madeo (2011, 1778) states, “social biases … form the backdrop of genetic counseling.”

Clinicians absorb professional misinformation from the mainstream medical stance against ID. The well-known (although dated) cases of Baby Doe and Baby Jane Doe, which involved denial of beneficial treatment to infants with ID who were not terminally ill, suggest that doctors are biased against disabled lives. Obstetrician Steven Ralston (2000, 335) states that in medical school he was taught that “disability—no matter its form—is a bad thing and to be avoided at all costs … . That children with congenital diseases may find their lives to be rich and valuable was hardly recognized.” This is anecdotal evidence—but there are general concerns that medical training regarding ID needs improvement through clinical education and personal encounters with the ID population (Santoro 2018). Research consistently shows that medical professionals rate the quality of life of people with disabilities significantly below the individual’s own rating.Footnote 3 Hannah Pelleboer-Gunnick et al.’s 2017 report indicates that stereotyped perceptions and “stigmatizing attitudes towards people with ID appear to be present among mainstream healthcare professionals.” David Klein’s 2011 literature review confirms that, like Martha’s doctors, a high percentage of reproductive clinicians hold negative views of life with disability. Madeo (2011) finds that genetic counsellors have a more negative perspective on ID than people directly affected and that these attitudes can influence how they describe conditions to parents.

Why Clinicians are Culpably Ignorant About Disability

It is one thing to claim that professionals are ignorant about ID but another to claim that they are culpably ignorant. When ignorance is due to deficient inquiry, they would have known the truth had they investigated as thoroughly as they should have—and so their mistaken beliefs about ID harm are avoidable. Responsibility for intellectual shortcomings does not require that clinicians be aware of them. It only requires that they be reasonably expected to take steps to inform themselves about ID through medical practice guidelines, continuing professional education, and training materials from disability organizations. When they do not, professionals are to blame for conveying inadequate information about ID to parents.

McCoyd (2015, 274) states that parental SA “decisions are known to be affected by heuristics and inherent biases.” Heuristics are mental processes, occurring outside of conscious awareness, that simplify complex problems so decisions can be made efficiently. While helpful, they can also cause serious errors in evaluation of evidence, resulting in faulty beliefs. I know of no empirical evidence that professionals are subject to mental heuristics, but it is a reasonable inference from research which shows that human thinking, in general, is biased in predictable ways (Gratton et al. 2017; Hess and Pickett 2013).

  • Stereotyping and oversimplifying. Clinicians may categorize people with ID into a homogenous group and reduce the complexities of ID to simple medical features. Prenatal testing picks out a single fact—the child will be disabled—and makes a sweeping generalization that ignores everything else about who they could be.

  • Confirmation bias. Clinicians may search for and interpret information about ID and quality of life in a way that reinforces their existing assumptions, while ignoring data that challenges and does not fit their preconceptions.

  • Conservatism bias. Clinicians may fail to revise their beliefs about ID harm when presented with evidence (like the positive testimony of people with ID) that goes against what they believe to be true.

  • Anchoring effect. Clinicians may be overly influenced by their initial beliefs about ID. The impression that it is correlated with poor quality of life becomes a starting point which is resistant to empirical data about the well-being of people with ID.

  • Availability error. Clinicians may evaluate the traits of a future child by how easily instances of ID come to mind. Medical attitudes are pessimistic partly because doctors see the most severely disabled children, which skews their perspective about life with ID.

  • False consensus effect. Clinicians lack regular contact with families successfully raising children with ID and spend most of their time with colleagues who share negative attitudes about ID—and so they may conclude that the tragedy view of ID is common sense.

  • Blind spot bias. Clinicians may not recognize the limits of their knowledge and be overconfident in the truth of their beliefs. Because they are better informed medically about ID, they may find it difficult to think about quality of life from the perspective of those who are better informed experientially.

These intellectual vices prevent careful investigation and deliberation. They may explain why many clinicians hold inaccurate beliefs about ID, quality of life, and the Harm Rationale.

However well-informed they are about the medical aspects of ID, a lack of social knowledge of what life with ID is like means that professionals are inadequately informed overall. Too often clinicians presume expertise on ID, while the knowledge of parents and others in close relation with ID is excluded. This is problematic. Standpoint epistemology, Patterson and Satz (2002, 121) state, insists that “knowledge claims are always socially situated and … failure by dominant groups to interrogate beliefs arising from their social situation leaves them in an epistemologically disadvantaged position …, one that distorts” because some perspectives are invisible. Family members bring unique and valuable insight about life with ID, knowledge that clinicians without first-hand experience do not have. For professionals to ignore their testimony is epistemically unjust.Footnote 4Martha’s doctor is justified in communicating the Harm Rationale to her only if he is justified in believing it—and he is justified in believing it only if he has been intellectually virtuous in acquiring it. If he has been intellectually negligent in forming the belief that ID is harmful, then his believing is not warranted—nor is his advising SA to Martha on its basis.

Alternative Explanations of Inadequate Disability Counselling

I have argued that culpable ignorance is the best explanation of inadequate disability counselling. It might, however, be objected that there are plausible alternatives: (a) that full knowledge is the required explanation, (b) that innocent mistake is the real reason clinicians convey faulty information to parents, or (c) that justified scepticism best accounts for inadequate counselling.

Full Knowledge as a Necessary Explanation

It might be thought that full knowledge is necessary for responsibility (Rosen 2003). Someone is at fault only if they know they are engaging in misconduct—but clinicians seldom act with direct awareness that their advice is inadequate.

It is true that few professionals deliberately convey information about ID which they know to be misleading. Medical personnel understand their moral and legal responsibility to educate patients truthfully—they do not deliberately violate their codes of ethics by dishonestly communicating what they know to be faulty information about life with ID.

It is not true, however, that responsibility requires awareness by a person that they are doing something wrong. While knowledge is sufficient, so is negligence. A person is responsible if they do know that their behaviour is questionable or if they should and could know that it is. A person who is culpably ignorant does not know the truth that they are reasonably expected to know and, apart from negligence, would know. Professionals have a duty of reasonable care and due diligence in forming their beliefs, and so they are culpable for inadequate information about ID that, because of careless inquiry, they believe and convey to parents. Blame for not knowing better does not require awareness of wrongdoing. (There is an extensive legal literature on mens rea—the knowledge of wrongdoing that is part of a crime. See, for example, Baker 1987).

Innocent Mistake as the Best Explanation

It might also be thought that innocent mistake is the real reason why clinicians communicate inadequate information. They are convinced that ID means poor quality of life and so see no need to investigate further since, in their view, the Harm Rationale is not mistaken. And so they do meet their epistemic obligations and are not negligent after all.

Gideon Rosen (2003, 74 and 67–68) notes that “it is unfair to blame someone for doing what, through no fault of his own, he takes himself to be entitled to do.” Consider a sexist in the 1950s who, given his social conditioning, does not think that women should be treated equally to men. While he knows of feminist critiques of sexism, he dismisses them as wrong-headed and sees his own views as obviously correct. That a person “has failed to see through a pervasive … ideology need not be a sign of culpable negligence. It might just be a sign of ordinariness.” Their personal ignorance is caused by cultural ignorance—and their failure of moral insight is not their fault. While ignorant, they are innocent.

Like the sexist, clinicians inhabit environments in which ableist ideology is an axiom of common sense. Their minds are saturated with socially constructed assumptions that see ID and well-being as contradictory, and so, while aware of the disability critique of SA, they do not take it seriously. They feel certain that the Harm Rationale is true and, having no reason to think it false, are epistemically blameless in believing it.

It is true that widespread misconceptions of ID can be hard to counteract. But the parallel between sexism and ableism breaks down. 1950s sexism involves what van Woudenberg (2009, 374) calls “deep ignorance,” where the person does not know that there is a question about their belief. But clinicians are not in a condition of deep ignorance—instead, they are in a situation of deep disagreement. Since the advent of prenatal testing in the 1970s, genetic professionals, bioethicists, and the disability community have vigorously debated their purpose and consequences—and clinicians have been exposed to differing points of view about SA. This plurality of perspectives should create scepticism in their minds—it gives them a reason to rethink the Harm Rationale and makes it irrational to discount the disability perspective. (On the epistemic significance of disagreement see Frances and Matheson 2018).

In addition, professionals know enough to realize that life with ID is meaningful and not disastrous. There is the presence of individuals with Down’s syndrome in the media, visible community integration of people functioning well with ID, and positive testimony from parents raising ID children—and there are practice guidelines and legal requirements of which clinicians are aware. While in Rosen’s case it may take a moral genius to see the wrongness of sexism, professionals do not need extraordinary insight in order to know that the Harm Rationale is contested, if not false. And so they are not innocently mistaken when they believe and convey inadequate information.

Ignorance is blameless, FitzPatrick (2008) says, in three instances: extreme indoctrination (where a person cannot reasonably be expected to gain relevant moral knowledge), benighted historical and cultural contexts (where moral knowledge is not readily available), and very difficult cases (where moral knowledge is extremely hard to discern). None of these excusing conditions apply to reproductive medicine professionals in today’s world. They work in a field where for decades there has been controversy surrounding prenatal testing and SA. They know of the shortcomings in genetic counselling since, as Wasserman (2015, 230) points out, “concerns about informed consent and misinformation are widely shared.”

Justified Scepticism as the Best Explanation

Finally, it might be thought that clinicians are not unaware of the disability critique of harm-based SA, just unconvinced by it. They may know information but omit it because of legitimate scepticism. Many clinicians realize that people with ID have friendships and hold jobs. By self-report, however, few share with parents those positive abilities in their descriptions of ID conditions like Down’s syndrome but focus instead on negative medical aspects (Madeo et al. 2011). It is unlikely that clinicians purposefully hide facts in order to influence parental perceptions of ID and decisions about SA. Instead, they fail to convey the disability perspective because they do not consider it plausible.

On some moral questions there is only one reasonable side—simple issues like drunk driving or domestic violence. Selective abortion, however, is a contested issue where there is deep disagreement among medical professionals, scholars, and disability advocates. Clinicians may be sceptical of the disability perspective for several reasons.

First, they may believe that children with ID are harmed by being brought into existence. The concern to prevent harm can take many forms, and professionals may not restrict harm to severe or avoidable ID. They may grant that life with mild or moderate ID is good enough—and much better than no life at all. But they may think that, while worth living, it is a lesser life that lacks important goods—that ID makes life harder even if not positively bad. They may consider a child harmed because ID will make it more dependent on others, will result in it facing social prejudice, and will give it little prospect of conventional accomplishments. They may believe that every child should have an open future and that any degree of ID which narrows the future constitutes harm. Or they may accept an impersonal harm principle: ID births should be prevented, not because they wrong particular children, but for the sake of a better world. This understanding—that only children with the best life chances should be born—may inform reproductive counselling. As noted earlier, clinicians may also think that the interests of the child are not the only morally relevant considerations in SA decisions—they may also take into account quality of life of parents, for example.

Second, professionals know that conditions like Down’s syndrome can come in different degrees, which are impossible to predict. While it is true that most affected people have mild or moderate ID, some develop profound impairments. Clinicians also know that level of ID is not the only factor relevant to the well-being of people with Down’s syndrome, for example, who are at higher risk of developing depression, Alzheimer’s disease, and dementia and often have low-functioning immune systems and malformations of the heart. These factors all affect quality of life, and recommendations in cases like Martha's might be explained by professional awareness of these possibilities.

Third, clinicians know that the alternatives are not between parents having a child with ID or having no child at all. There is a third option: women pregnant with a disabled fetus can choose to abort and bring into existence a different child who is not affected by ID. While ID might allow for a good life, that is not a sufficient reason to give birth to an impaired child instead of another child who might have the possibility of leading a better life. Medical counsel might be based on the replaceability consideration.

For many reasons, then, the Harm Rationale may continue to seem true to clinicians despite criticism of which they are aware. Selective abortion is not a simple issue—neither the Harm Rationale nor the disability critique are self-evident truths about which all reasonable people agree. But precisely because it is a complicated issue where there is a range of viewpoints, professionals should present to parents all relevant information about ID and options concerning SA—whatever their own personal opinions.

Consider other situations of disagreement where it is morally wrong to withhold vital information since there is an obligation to present all sides of an issue. Suppose a professor provides only her favoured position on abortion or assisted suicide. She has no duty to give two sides on questions like domestic violence, which all sensible people think is wrong. But where there is reasonable disagreement, professors should give differing points of view a fair hearing so that students can think carefully. Or consider crisis pregnancy centres which seek to persuade women with unintended pregnancies that adoption or parenting is a better choice than abortion. When—because of religious ideology—women do not receive comprehensive, accurate, evidence-based facts about all available options, their autonomy is compromised (Bryant and Swartz 2018). Or imagine a doctor who does not give a patient complete information concerning end-of-life care. By ignoring the option of hospice, they leave the false impression that the choice is between aggressive treatment, unrelieved pain, or assisted death. It is dishonest to propagate misinformation by omitting facts or viewpoints with which one disagrees.

The same thing happens when clinicians give parents like Martha and John two possibilities—abortion or a life of distress—and ignore the strong likelihood that their ID child will have a rewarding life. Reproductive autonomy means that parents have the right to make a voluntary, informed SA decision. Clinicians, then, have a duty to provide accurate and balanced facts, to disclose all information that a thoughtful parent needs to make a good decision. This includes, Jonsen (2006, 70) says, the entire range of options—both what the clinician recommends as well as what they consider less desirable but still reasonable. Professionals who know that the Harm Rationale is contested should not omit or misrepresent the disability perspective because they are personally unpersuaded by it. They must follow the full disclosure rule and convey all pertinent information—those who give one-sided information cannot do so in good conscience.

Concluding Remarks

The nurse practitioner called Martha and John with unexpected test results. “I would like you to repeat the test today,” she said, “we don’t have much time.” Martha was confused. “Time to terminate,” the nurse replied, “if there’s something wrong.” Several days later, when amniocentesis revealed Down’s syndrome, the nurse called again. She sounded desperate: “there’s still time if you want to change your mind.” No, Martha insisted. “I see”—the nurse struggled not to challenge her decision—“do you have any questions?” Martha tried to find the words: “I’ve heard that people with Down syndrome can be … happy.” The nurse paused. “I guess they can be happy,” she said at last. “I don’t really know” (Beck 1999, 129, 183–184 and 302).

Selective abortion is morally questionable when it is based on a misrepresentation of how bad things will be for the child—Bonnie Steinbock (2009, 157) states that it “should be based on a realistic assessment of the facts, not stereotypical thinking.” But research on disability counselling reveals shortcomings in what professionals know and communicate. Clinicians who leave parents thinking that the Harm Rationale is valid either (a) believe it to be the full picture (in which case they are at fault for not having learned facts they should know) or (b) know it to be contested (in which case they are at fault for not sharing positive facts about ID).

Both professional self-report and parent testimony indicate that many clinicians lack sufficient knowledge about ID. Professionals like Martha’s doctor internalize negative stereotypes about ID—they uncritically accept this dominant narrative without diligent inquiry. They may not see their failure to inquire about ID harm as intellectually flawed. But responsibility for ignorance does not require knowledge of wrongdoing: it is enough that they should and could know the truth but do not. “Because they occupy such a critical position,” Patterson and Satz (2002, 120) state, clinicians “have a unique ethical responsibility to explore their own attitudes and beliefs concerning disability.” Beliefs about harm have a crucial place in how professionals guide SA decisions, and so their basic epistemic duty is to be conscientious—to do their best to know the truth about ID and quality of life. Intellectually responsible clinicians do more than simply follow present evidence they have, which may be inaccurate or incomplete. Their duty to follow the best evidence they can acquire implies a duty to educate themselves to the best of their ability about ID. First, intellectually virtuous professionals supplement their clinical knowledge of ID with non-clinical information about what life with ID is like. While they are experts in medical facts about various disorders, most have limited exposure to people with ID and little understanding of their day-to-day life (Madeo et al. 2011). Responsible clinicians, as part of their continuing education, develop relationships with the ID community and have contact with people with ID in non-medical settings. They also take workshops or graduate classes in reproductive ethics and disability studies. Second, intellectually virtuous professionals know and follow the clinical management guidelines of professional groups like ACOG, the National Society of Genetic Counselors, the American Society for Reproductive Medicine, and the Society for Maternal-Fetal Medicine and of disability organizations like the National Down Syndrome Congress, the National Down Syndrome Society, and the Brighter Tomorrow Foundation. They know and provide parents with information that (a) challenges common misconceptions of ID and presents it from the perspective of people with ID, (b) identifies community services and financial assistance programmes for them and their families, and (c) offers the opportunity to talk with parents of children with ID. (The Prenatal Information Research Consortium—which brings together experts with an interest in prenatal medicine—is a useful resource for professionals. Biesecker and Hamby (2000) and Sheets et al. (2011) discuss models of prenatal counselling, moral responsibilities and training of counsellors). Third, intellectually virtuous professionals understand and obey the law. Since 2008 the federal Prenatally and Postnatally Diagnosed Conditions Awareness Act requires clinicians to give scientifically sound information and support services referrals to parents receiving a positive test for ID. Several states have also passed prenatal education legislation requiring up-to-date, evidence-based, written information regarding peer and social supports as well as the positive outcomes of having a child with ID (Bradford 2014). In 2014, for example, Pennsylvania began requiring healthcare workers to provide only positive information about ID (Kaposy 2018). (The federal law has never been funded because of disagreement over how the topic of abortion would be presented in materials given to parents. Wasserman (2015) points out that the law requires information after testing [about options to SA] but not before [about testing itself]). Parents, Kittay (2019) points out, are not fully autonomous agents in medical situations—and clinicians should recognize the power imbalance. Their job is to help parents gain the best possible understanding of what their child’s quality of life would be like. This requires that they are diligent in inquiring about ID and honest in communicating with parents. Clinicians, Julian Savulescu and Richard Momeyer (2000, 139) point out, are more than fact-providers. Since knowing accurate information and having adequate understanding are not the same, they “must attend to how that information is received, understood and used.”Footnote 5 Responsible professionals enable truth-hearing—they help parents master facts, consider alternative possibilities, and understand what the options are like. They educate with clarity (in a way that can be comprehended) and compassion (in a way that is sensitive to fear and sadness). They also refer parents to those with more knowledge about life with ID.

As non-invasive prenatal diagnosis becomes increasingly sophisticated, less expensive, and more broadly available, parents will face expanded choice about disability-based elimination—and the significance of clinical counselling in decision-making will grow. Choi, Van Riper, and Thoyre (2012, 160–163) identify two factors that influence SA decisions—demographic factors (maternal age, gestational age, previous abortion) and psychosocial factors (perceived quality of the child’s life, perceived burden of caring for the child, attitudes toward people with disabilities, support from others). The latter are “the ones most strongly influenced by the nature and type of information providers give to [parents].” Indeed, “when positive information is provided with appropriate peer supports,” Mark Bradford (2014, 13) points out, “the incidence of abortion is reduced.” How very different this is from the behaviour of Martha’s doctor.Footnote 6