Birds of a Feather? Genetic Counseling, Genetic Testing, and Humanism

Abstract

Humanism is a philosophy that emphasizes rational, scientific, and empiric analysis of the world we live in to improve the physical, social, and psychological life of humanity. Although individual genetic counselors may or may not identify as humanists, genetic counseling and genetic testing are primarily humanistic endeavors because they are situated in the context of humanistic medicine in the westernized world. Humanistic goals are also implicit and explicit in the profession and practice of genetic counselors. This review examines the relationship between humanism and genetic counseling, highlighting situations in which the two may be discordant, and suggests ways that genetic counselors can reconcile these discordances.

In this review I address three questions:

1. What role has humanism played in shaping the development of the genetic counseling profession, the practice of genetic counseling, and the utilization of genetic testing?

2. What aspects of genetic counseling practice and genetic testing are or are not consistent with humanistic philosophy?

3. Does it matter if genetic counseling and genetic testing are or are not consistent with humanism and how can inconsistencies be reconciled?

To develop the arguments in this paper, I will first define humanism and genetic counseling.

WHAT IS HUMANISM?

Humanistic philosophy is very much a product of Western European thought and ethics. It had its beginnings in the Renaissance, with roots in classical Greece and Rome. Broadly speaking, classical humanism was based on the idea that individual human and social betterment could be achieved through the study of the liberal arts and not just through adherence to religious beliefs.

In its modern sense, humanism blossomed in the late seventeenth, the eighteenth, and early nineteenth centuries during the Enlightenment (also called the Age of Reason) and the beginnings of scientific/philosophical inquiry (what we now call science was, until 1834, often called philosophy). Think Isaac Newton, Antonie van Leeuwenhoek, Voltaire, wife and husband Marie Lavoissier and Antoine Lavoisier, Mary Somerville, Jean-Jacques Rosseau, Immanuel Kant, James Watt, James Hutton, Benjamin Franklin, sister and brother Caroline and William Herschel, Anne Conway, and Mary Wollstonecraft, to name a few. This period also witnessed women making inroads into being recognized in male-dominated fields such as science/philosophy, mathematics, and literature, albeit often constrained by social and economic limitations. Genetic counselors—who, around the world, are overwhelmingly female—are the current benefactors of the efforts of these Enlightenment women to integrate themselves into the scientific enterprise and to lay the groundwork for feminist philosophy (the word “scientist” first appeared in print in William Whewell's 1834 review of Mary Sommerville's book On the Connexion of the Physical Sciences. the best-selling book for 25 years for the venerable British publisher John Murray until Darwin's Origin of Species).

Humanism became a more formalized movement in the late nineteenth and twentieth centuries, and there are now many local, national, and international humanist organizations. Twenty-first century humanism emphasizes rational, scientific, and empiric analysis of the world we live in to improve the physical, social, and psychological life of humanity. According to the American Humanist Association, humanism “is a progressive philosophy of life that, without theism or other supernatural beliefs, affirms our ability and responsibility to lead ethical lives of personal fulfillment that aspire to the greater good” (https://americanhumanist.org/what-is-humanism/definition-of-humanism/, accessed 1/15/2019). It rejects explanations of the universe based on religious dogma, scripture, or divine revelation.

This nontheistic view has resulted in tensions and conflicts between and within the scientific and religious communities, as the two worldviews are often seen as being in opposition to each other. This perceived polarization between scientific and religious communities is unfortunate. This misperception is based on a limited understanding of the complexity of the human mind, which is perfectly capable of harboring two apparently conflicting ideas without producing cognitive dissonance. It is entirely possible for biologists, geologists, and physicists to be devoutly religious just as it is equally true that many people with strong spiritual and religious beliefs accept the validity of global warming, evolution, plate tectonics, and the Big Bang theory (Martin 2010; Ecklund et al. 2016; https://www.interfaithpowerandlight.org/religious-statements-on-climate-change/, accessed 1/17/2019). Despite the supposedly conflicting views of humanism and religion, humanism has been a critical component of the modern scientific and medical enterprise, regardless of the religious beliefs of individual scientists. Although some health-care providers and patients may pray to God or some deity to assist with cure and recovery from disease, medical therapy is firmly grounded in reason, logic, scientific investigation, and empiric observation rather than relying primarily on divine intervention.

WHAT IS GENETIC COUNSELING?

Genetic counseling as a formal term to describe a clinical practice was introduced in 1947 by Sheldon Reed, who famously and vaguely defined it as “a kind of genetic social work.” Genetic counseling as a profession emerged in the United States with the establishment of a graduate-level genetic counseling program at Sarah Lawrence College in Bronxville, New York in 1968 (the first students matriculated in fall of 1969) (Stern 2012). Similar programs sprouted up over the next 50 years in the United States and globally; the Transnational Alliance of Genetic Counseling lists more than 80 training programs from 18 countries on six continents (http://tagc.med.sc.edu/education.asp, accessed 1/15/2019).

The practice and scope of genetic counseling has evolved in the half-century since the founding of the Sarah Lawrence program (Resta 2006). The most widely accepted and cited definition of genetic counseling is the one crafted and endorsed by the National Society of Genetic Counselors (2006):

Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the following:

• Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence.

• Education about inheritance, testing, management, prevention, resources, and research.

• Counseling to promote informed choices and adaptation to the risk or condition.

The practice and practitioners of genetic counseling vary around the world but this definition probably captures the spirit of what most genetic counselors are trying to achieve, as judged by the large body of international publications about the goals, effectiveness, and conduct of genetic counseling (Resta 2019). Genetic counselors everywhere strive to be compassionate people who work toward providing highly competent, ethical, and compassionate care to their patients in an effort to improve their medical and psychological well-being.

WHAT ROLE HAS HUMANISM PLAYED IN THE DEVELOPMENT OF THE PROFESSION AND PRACTICE OF GENETIC COUNSELING?

Biological and medical sciences are inherently humanistic in their practice and ethos (Sinsheimer 1977), and genetic counseling is embedded within this larger sociocultural framework. In other words, genetic counseling is humanistic inasmuch as the practice of medicine in which it takes place as well as the scientific research that provides its basis are both largely humanistic endeavors.

Several important figures relevant to the history of genetic counseling were celebrated with awards by the American Humanist Association: Linus Pauling, who identified the molecular basis of sickle cell anemia; Herman Muller, who was awarded a Nobel Prize for his work on radiation-induced genetic mutations; and the psychologist Carl Rogers. On the other side of the coin, some geneticists have maintained deeply held religious beliefs, such as Theodosius Dobzhansky, R.A.F. Fisher, Francis Collins, and, of course, the monk Gregor Mendel. The religious views of these geneticists demonstrate how the human mind can readily accommodate the coexistence of religious and humanist worldviews.

But it was the work of Carl Rogers that has the most direct relevance to the practice and humanistic ethos of genetic counseling. Rogers was awarded the American Humanist Association's “Humanist of The Year” Award in 1964, just 4 years before the establishment of the Sarah Lawrence genetic counseling training program. Rogers was a leading figure in the development of a humanistic model of psychology that emphasized the individual's inherent potential to grow and develop as an emotionally healthy, mature, and self-aware person. Humanistic psychology, like genetic counseling, places great value on patient autonomy: “… humanistic psychology fully acknowledges individual autonomy and the pursuit of self-actualization in the lives of all individuals” (http://oxfordmedicine.com/view/10.1093/med/9780199571390.001.0001/med-9780199571390-chapter-007, accessed 1/17/2019).

Rogers incorporated humanistic psychology into clinical practice with his counseling technique of client-centered therapy, which is based on the philosophy that the therapist should be nonjudgmental and nondirective and that patients should take an active role in their own therapy. Rogers had no direct connection with the genetic counseling profession and early on distanced himself from the term “nondirectiveness” because he felt it was misintepreted. He maintained that the term “client-centered therapy” better reflected his philosophy than “nondirectiveness” did. In Rogers’ view, clients should “self-actualize” utilizing their own inherent skills, aided by the therapist, rather than achieving a goal dictated by the therapist's view of human nature (Evans 1978). Rogers’ client-centered therapy formed the psychological underpinnings of the genetic counseling model used first at the Sarah Lawrence Program, and for several decades was the predominant counseling model in genetic counseling practice (Veach et al. 2007; Stern 2012).

Nondirectiveness, which, as interpreted by genetic counselors, is somewhat different than how Rogers used it, also became a central ethical value of genetic counseling practice for many years (Kessler 1997). But this conflates nondirectiveness as an “ethical value” with nondirectiveness as a “counseling technique.” Rogers would agree that it would be unethical for genetic counselors to impose their personal values on their clients. But the Rogersian approach would be to try to help clients strengthen and utilize their inherent psychological skills to direct clients to decisions that are consistent with clients’ best interests, as defined by clients themselves. In Rogers’ view, directiveness toward a specific outcome is desirable, as long as the therapist and client work together to help the client figure out what goal the client wanted and how the client could best work to achieve it.

Humanistic philosophy is still pervasive in the field of genetic counseling. Humanism is explicitly stated as a key value of several genetic counseling training programs, as illustrated by the following examples:

The Ohio State University Genetic Counseling Program will provide graduate students … with a culture embodied in its values of altruism, compassion, diversity, education, ethics, honesty, humanism, integrity, lifelong learning, personal and professional growth… —https://medicine.osu.edu/residents/masters_programs/genetic_counseling/program/pages/index.aspx, accessed 1/16/2019

Join the … Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College. Integrating education, healthcare, and humanism, …. —https://www.sarahlawrence.edu/genetic-counseling/, accessed 1/16/2019

The Columbia University Genetic Counseling Graduate Program curriculum combines basic science and clinical medicine with humanism and professionalism. —https://www.ps.columbia.edu/education/academic-programs/program-genetic-counseling, accessed 1/16/2019

The [Case Western] genetic counseling program fosters the development of professional skills to provide students with the tools to become knowledgeable, competent and caring genetic counselors and emphasize personal growth including:

• Humanism, compassion, integrity, and respect for others; based on the characteristics of an empathetic genetic counselor —http://genetics.case.edu/files/Genetic_Counseling_Student_Handbook_2018.pdf, accessed 1/16/2019

Even a recent job posting for a genetic counselor mentions humanism (https://www.linkedin.com/jobs/view/genetics-counselor-at-florida-atlantic-university-1036727676, accessed 1/16/2019):

The mission of … a community-based medical school is to advance the health and well-being of our community by training future generations of humanistic clinicians and scientists and translating discovery to patient-centered care.

The guiding ethical principles of the U.S. genetic counseling community are found in the Code of Ethics of the National Society of Genetic Counseling (NSGC) (https://www.nsgc.org/p/cm/ld/fid=12, accessed 1/27/2019). Very similar ethical codes have been promulgated by the Human Genetics Society of Australasia, the Association of Genetic Nurses and Genetic Counsellors in the United Kingdom, the Canadian Association of Genetic Counsellors, and the European Board of Medical Genetics. None of these codes specifically state—or negate—a humanistic philosophy. Indeed, the original NSGC Code of Ethics, formulated in 1992, was developed with a very conscious attempt to be modeled on feminist ethics rather than humanism (J Benkendorf, pers. comm.). Nonetheless, the language of the NSGC Code of Ethics is concordant with humanistic principles—“Enable their clients to make informed decisions, free of coercion…,” “Provide genetic counseling services to their clients regardless of their clients’ abilities, age, culture, religion, ethnicity, language, sexual orientation, and gender identity,” “These values are drawn from the ethical principles of autonomy, beneficence, nonmaleficence, and justice… .” This vocabulary draws on the principles of humanism and is quite similar to the language used by humanist organizations, as illustrated by these examples:

Humanism is a democratic and ethical life stance that affirms that human beings have the right and responsibility to give meaning and shape to their own lives. Humanism stands for the building of a more humane society through an ethics based on human and other natural values in a spirit of reason and free inquiry through human capabilities. —The International Humanist and Ethical Union Minimum Statement on Humanism (https://iheu.org/about/humanism/, accessed 1/1/2019)

Regardless of race, ethnicity, economic status, ability, sexual orientation, gender identity, religious beliefs or nonbelief, or citizenship, all individuals have universal human rights that must be respected and protected. —https://americanhumanist.org/key-issues/social-justice/, accessed 1/18/2019

The [American Humanist Association] also supports every woman's unequivocal moral and legal right to autonomy over her own body and reproductive choices, meaning we work to ensure women's access to family planning, contraception, birth control, emergency contraception, and healthcare services. —https://americanhumanist.org/key-issues/social-justice/, accessed 1/16/2019

Although no studies have been conducted to determine if genetic counselors typically identify as humanists, at least in the United States they are less likely than the general population to believe in a supreme deity, attend religious services, pray, or believe in an afterlife (Cragun et al. 2009). This is compatible with the demographic profile of religious beliefs of scientists (http://www.people-press.org/2009/07/09/public-praises-science-scientists-fault-public-media/, accessed 1/17/2019). On the other hand, physicians generally tend to be more religious than scientists (Curlin et al. 2005), so being a medical care provider is not necessarily an indicator of religiosity. But professional medical societies, medical institutions, and thought leaders often emphasize the importance of humanistic medicine (e.g., see https://www.abp.org/professionalism-guide/chapter-8/humanism, accessed 1/17/19).

To be clear, I am not suggesting that the practice of genetic counseling was developed to intentionally promote humanism or that most genetic counselors are card-carrying humanists. Rather, the point is that humanism or philosophies compatible with humanism are woven into the fabric of the genetic counseling tradition in the Western world. This influence is reinforced by the scientific training and the personal beliefs of genetic counselors themselves.

WHAT ASPECTS OF GENETIC COUNSELING PRACTICE ARE OR ARE NOT CONCORDANT WITH HUMANISTIC PHILOSOPHY?

Although the underlying philosophy and ethos of genetic counseling is compatible with humanistic tradition, whether this is also true of the day-to-day practice of genetic counseling and genetic testing is a more complicated question.

Some areas of genetic counseling practice are compatible with humanism. Genetic counseling for germline genetic testing for hereditary cancer, such as the BRCA1/2 genes, aims to identify women at high risk of developing breast cancers to help them decide if they wish to pursue genetic testing with the aim of offering appropriate screening and risk-reducing strategies to reduce the chances of patients being diagnosed with, or treated for, cancer. Genetic counseling for hereditary cardiomyopathies can guide patients through the process of deciding whether to pursue genetic testing so that appropriate measures can be taken to reduce the risk of sudden cardiac death. Exome and genome sequencing of children or adults with rare genetic conditions can help establish a diagnosis and a prognosis and aid in the treatment and management of some conditions. The intention of counseling and testing in these settings is to help patients make autonomous decisions with the goal of reducing or preventing future suffering.

Genetic counseling is not only about genetic testing. Genetic counselors also work to enrich patients’ sense of autonomy; help them adapt to living with or being at risk for a genetic condition; communicate critical, complex, and at times devastating clinical information; and provide comfort and empathy in difficult moments. These tasks all fit comfortably within a humanistic framework.

Other aspects of genetic counseling and testing are more complicated when it comes to being humanistic in that they do not necessarily “affirm[s] our ability and responsibility to lead ethical lives of personal fulfillment that aspire to the greater good” or “stand … for the building of a more humane society” (https://iheu.org/about/humanism/, accessed 1/1/2019).

Depending on one's viewpoint and interpretation, some aspects of genetic counseling can be seen as either supportive of or contrary to humanistic values and principles.

Prenatal screening for Down syndrome and other chromosomal abnormalities has long been criticized by some people with disabilities, their families, and their supporters as a form of extreme bias based on ability (Parens and Asch 2003). They view prenatal screening as an attempt to rid the world of people with disabilities and judges them to be a drain on families and society, lives not worth living. From these critics’ perspective, prenatal screening can hardly be thought of as building a more humane society and essentially amounts to ability-based prejudice.

Supporters of prenatal screening counter that the reality is that not all families are financially or functionally capable of caring for a child with multiple health, developmental, and behavioral issues. Prenatal screening, they maintain, is not intended to eliminate people with disabilities but rather to allow individuals and families to make choices that are most appropriate for their unique situations (Markens 2013). This would be compatible with humanistic values such as autonomy, reproductive freedom, and the right to shape one's own life.

The ethical waters are further muddied with the offer of prenatal testing for all pregnancies, not just for so-called high-risk women such as those 35 and older or who have certain ultrasound findings. Is universal offering of prenatal screening further proof of prejudice against people with disabilities or is it a way of enhancing the autonomy of all women and not just a minority of women who are somewhat arbitrarily labeled “high risk” (after all, a 40-yr-old pregnant woman has only an ∼2% probability of having a live-born baby with a chromosomal disorder)?

The argument that prenatal testing does not aim to eliminate people with disabilities is partially undercut by the history of prenatal testing and genetic counseling. Until the 1990s, almost all studies that attempted to measure the success of genetic counseling did so by examining its impact on reproductive choices and/or the incidence of babies born with disabling conditions (Resta 2019). On the other hand, the genetic counseling profession today does not typically evaluate its effectiveness by these measures and is, somewhat paradoxically, a strong advocate for people with disabilities and individual patient choices about whether or not to continue a pregnancy to term. Serving in these—at times—opposing roles of screeners and advocates can result in discordance between different humanistic values.

The complexity of the issues surrounding prenatal screening also arises in the context of offering “expanded carrier screening”—testing individuals of all ancestries for carrier status of sometimes hundreds of genetic conditions. The stated justification for carrier screening is to help couples make more informed reproductive choices. However, the vast majority of these conditions are very rare, there is a wide range of severity among and within the conditions, and determining the pathogenicity of rare variants can be extremely difficult (Kraft et al. 2019). In addition, the impetus for the development of expanded carrier screening—and noninvasive prenatal testing (NIPT)—came primarily from commercial laboratories rather than from a widespread demand from the clinical or public sectors (Holton et al. 2017; Swanson and Goldberg 2018). Is such screening a means of enhancing and informing reproductive autonomy, further evidence of prejudice against people with disabilities, or a natural outgrowth of the business model of medical testing? Well, arguably, expanded carrier screening is all three.

Conflicts with the values of humanism can also arise with exome/genome sequencing (ES/GS) of the healthy population, as distinct from such testing of the population of patients who have or who are at higher risk for suspected genetic conditions. The explicit humanistic goal of ES/GS is to reduce the risk of morbidity and mortality for genetic disorders such as cancer, heart disease, and cardiovascular disease by identifying people who carry clinically significant genetic variants but who have none of the standard risk factors such as clinical or family history.

One concern about ES/GS, when applied to the healthy population, is that interpretation of the clinical significance of genomic variants, especially in healthy populations, is extraordinarily difficult and complicated. There is a significant risk of both false-positive and false-negative results (Wright et al. 2019). Patients may be told that they are at high risk of developing a disease or, conversely, that they are not at high risk for a disease when in fact they carry a highly penetrant pathogenic variant. Although this is also true for at-risk populations, there the problem is somewhat attenuated in that setting by having family history or other risk factors to assist with risk assessment. Furthermore, for many pathogenic variants detected on ES/GS there are very few interventions with adequate data to assess their utility in reducing disease morbidity and mortality. National and transnational large-scale research initiatives such as the United States's All Of Us (https://allofus.nih.gov), Europe's 1+ Millions Genomes (https://ec.europa.eu/digital-single-market/en/news/eu-countries-will-cooperate-linking-genomic-databases-across-borders), and Asia's Genome Asia 100K (http://www.genomeasia100k.com) will eventually provide data that will help with the interpretation and health-care application of genomic data, though it will likely be many years before the results of these studies will be useful in clinically meaningful ways.

Thus, although the goals of ES/GS in a low-risk population may be humanistic, the net effect for now of uncertain results and results of unproven clinical benefit may work at cross-purposes to informed autonomy and beneficence. This is particularly important in light of the growing number of commercial enterprises that are now offering ES/GS analysis directly to consumers.

Another type of genetic testing that may create conflicts with humanistic values is DNA- based ancestry testing. Companies promote such analysis as a means of better understanding people's ancestral origins and hence to improve their understanding of themselves as human beings. Nominally, this is very much in keeping with humanistic ideals of using science to help people understand humanity's place in the world and their ancestral relationships with other populations. Questions about the accuracy of the ancestral categories aside (Huml et al. 2019), such testing can serve to treat our personhood as the sum of our DNA. The message that largely nonfunctional bits of DNA somehow dictate your fashion preferences, behaviors, and personality is communicated through advertising for these products that often depict people changing their clothing to match their stereotype of what a particular ethnic group might wear (and conflating ancestry with ethnicity) or speculating on why they might have particular personality traits or idiosyncratic preferences based on DNA analysis (“I never knew I was part Italian until I had that DNA testing. That explains why I like pasta so much.”). DNA testing can reinforce racial stereotypes and exacerbate us versus them social dynamics—“My DNA says I am one of Them, not one of You.” (Wailoo et al. 2012). It creates the potential to reduce humanism to DNAism and downplay the many developmental, environmental, and stochastic factors that shape our humanity. This is not just unfounded speculation—DNA-based ancestry testing has been used to justify racist agendas (Zhang 2016).

DOES IT MATTER IF GENETIC COUNSELING AND GENETIC TESTING ARE OR ARE NOT COMPATIBLE WITH HUMANISM?

As noted above, genetic counselors are situated within the larger local, regional, and national delivery of health care, a largely humanistic endeavor. In addition, humanism is implicitly and explicitly pervasive throughout the history and practice of genetic counseling. Therefore, one would expect genetic counselors’ professional practice, ethos, and goals to be broadly similar to the ethos and goals of humanism, even if—as individuals—genetic counselors do not consider themselves humanists.

Genetic counselors should be prepared to justify any policies and activities that appear to be contrary to humanistic values. Furthermore, if genetic counselors are committed to the humanistic values expressed in the NSGC's Code of Ethics, then they are obligated to provide services that are reflective of this document and, just as importantly, criticizing and working to change applications of genetic testing and information that are contradictory to those values.

Aligning Genetic Counseling with Humanistic Goals: Suggestions and Barriers

There are several areas of genetic counseling—prenatal screening, expanded carrier testing, incorporating innovative genetic testing into clinical practice, awareness of the potential for abuse of genetic data—in which genetic counselors can work to better align their clinical services with humanistic goals (Madeo et al. 2011).

As discussed above, some people with disabilities, their families, and their advocates have raised concerns about the stigmatizing effects of prenatal testing. In addition, people with disabilities do not derive any direct medical or social benefit from prenatal screening programs. The humanistic benefit of prenatal testing is not readily apparent for this group of people.

Despite decades of prenatal testing and thousands of studies investigating its accuracy, sensitivity, program implementation, effectiveness, outcomes, etc., it is telling that there are almost no studies that even address the question of whether there are benefits to prenatal testing such as aneuploidy screening beyond the option of pregnancy termination. Does NIPT help produce better medical outcomes if a child with Down syndrome and a heart defect or duodenal atresia has a planned birth at a tertiary care center? Do families adapt better if a diagnosis is made prenatally? Does it improve children's ability to live up to their developmental potential? Not only do we not know the answers to these questions, researchers have not even systematically attempted to learn the answers.

It is not uncommon for prospective parents to say that they undergo prenatal tests so that they, their doctors, and their families “can be better prepared for the birth of a child with Down syndrome” (Bowman-Smart et al. 2019). Prenatal screening can take an emotional and psychological toll on women (Harris et al. 2012), and when it comes to diagnostic testing, there is a small but real risk of fetal loss. The benefits of testing should be worth its risks. Genetic counselors would be better able to counsel pregnant women if they were able to provide data that could help inform such decisions. If research can show that, in addition to allowing parents to make difficult and situated reproductive decisions, prenatal testing also improves the lives of people with disabilities, then there would be a stronger ethical argument that prenatal testing is compatible with humanistic values for all people, regardless of their physical or developmental potential.

The increasing number of legal limitations that are being put on abortion in the United States and worldwide (Conti et al. 2016) could actually help address this research deficiency. If abortion becomes less widely available or is no longer a legal option in the future, then a prime justification for prenatal testing—abortion of affected fetuses—would no longer be an option for many women (although economically and socially advantaged women would still likely be able to maintain some access to abortion [Lowy 2018]). This could motivate the obstetrical and genetics communities to conduct more research on the potential medical, adaptational, and psychological benefits of prenatal diagnosis.

To complicate matters, prenatal screening has expanded into the care of all pregnant women. Hence more of the frontline education, counseling, and guidance on prenatal and carrier screening will be provided by obstetricians, midwives, and family practitioners. Ethical ramifications and fine points can fade to the background when a medical service becomes routinized—it's just one more test to run along with antibody titers, fasting glucose levels, blood typing, and the myriad other screening tests that now make up a goodly part of the medicalized pregnancy experience. Lengthy ethical discussions are not typically part of pregnant women's appointments with their providers. Administrators do not reward practitioners for this and there are no insurance reimbursement codes for Ethical Discussion with Pregnant Woman. Thus, genetic counselors need to partner with their colleagues from other specialties to ensure that genetic services and testing are provided in a manner consistent with aims of humanism.

Commercial laboratories can be important sources of innovation in genetic testing and play a critical role in the introduction of new, better, and more cost-effective testing technologies (Evans and Vermeesch 2016). However, laboratories should not be the primary arbiters of which genetic tests are introduced into clinical practice. The voices of clinicians, patients, and those with no direct financial benefit from testing need to play dominant roles in the introduction and evaluation of new testing technologies. And governments need to provide the funding to conduct the necessary research that assesses the medical, economic, ethical, and social impact of genetic testing. Commercial entities should profit from their products but, to be consistent with humanistic values, those who derive the greatest financial benefit from a test should not be deciding which tests are best for patients. Genetic counselors and their colleagues from related specialties need to partner with laboratories, patients, social scientists, and ethicists to develop a more balanced approach to introducing innovative testing and policies into patient care.

This goal of cooperative test development may be difficult to achieve as care providers, clinics, and laboratories all have a vested interest in expanding the number and availability of genetic tests because they generate income. For medical centers and providers, genetic tests can generate more screening and other interventions, and for labs, more tests can mean greater profits. The profit motive, although often unacknowledged, can be a powerful incentive to incorporate more testing into clinical practice when the risks and benefits have not been clearly established (Kushnick 2015). Such financial conflicts of interest can produce blind spots such that relevant parties are psychologically incapable of recognizing when their recommendations are at least partially driven by financial gain (Sezer et al. 2015).

Harm from genetic testing and information can arise in ways beyond financial concerns. There is a long history of genetic data collected for ostensibly benign or helpful goals to be repurposed to ethically questionable ends. For example, during the nineteenth century, many so-called lunatic asylums in Europe and the United States collected data on the causes of insanity for all individuals admitted to these institutions. In the majority of cases, heredity was assigned as the primary cause, often based on the family report or supposition on the part of the clinician (Porter 2018). These data, as well as data collected from schools and the military on intelligence tests, were eventually used by supporters of eugenics as justification for eugenic programs such as nonvoluntary sterilization, racist policies such as antimiscegenation laws, limits on educational financing, and immigration restriction (Reilly 1992; Gottesman and Bertelsen 1996; Ferri and Connor 2005; Stern 2005; Porter 2018; http://www.eugenicsarchive.org/html/eugenics/essay7text.html). In much the same way, data from DNA-based ancestry testing, direct-to-consumer genetic testing, and even from clinical testing laboratories who sell or share their data for research purposes could be accessed and utilized by special interest groups and governmental organizations to inform a political agenda or a repressive policy such as immigration restriction (yet again) (Lynch 2012; Abel 2018), racial stigmatization that was reinforced when sickle cell carrier screening was introduced in the United States in the 1970s (Naik and Haywood 2015), or even more extreme actions such as deportation, internment, or social isolation, as has happened to many minority people at many times and in many places around the world, even in progressive democracies (Robinson 2010; Golash-Boza 2016). One does not need to turn to Nazi Germany to find an extreme example of the social abuse of genetics.

Genetic counselors can play a greater role in maintaining transparent guidelines that limit appropriate and safeguarded access to genetic data in several ways:

• Working with legislators to develop and enact privacy laws and racially unbiased immigration policies.

• Utilizing and working for genetic testing laboratories that do not share or sell patient data or least have data sharing policies that are spelled out clearly so patients can decide if they wish to use a particular laboratory.

• Greater awareness of the history of genetics so that they can better understand how even the best-intentioned research and databases can be subverted to nefarious or ethically questionable purposes.

The concern for data privacy becomes even greater as genomic testing expands beyond use in specialized clinics to broader applications such as newborn screening and testing of healthy adults by a greater number of laboratories and with less government oversight. The intentional or unintentional release of information from genetic databases, or hacking of these databases, provides very real opportunities for abuse or for beneficent use with unanticipated consequences that are not compatible with humanism.

It is by no means easy to create just and powerful laws that try to protect against the abuse of genetic information. For example, in the United States, the Genetic Information Nondiscrimination Act (GINA) of 2008 largely bans the use of genetic information of healthy people in determining their eligibility for health insurance. This legislation appears to be consistent with humanism. However, GINA privileges genetic information over other kinds of health-related information. Why should genetic disorders deserve special protection over communicable diseases or multifactorial conditions such as psychiatric disorders, diabetes, hypertension, and multiple sclerosis? For all of the good that GINA has achieved, at the same it violates the principle of distributive justice—the equitable distribution of goods and benefits across society. The lofty goals of humanism are straightforward to state but it can be difficult to actually apply them.

CONCLUDING REMARKS

Genetic counselors view themselves as highly ethical people who strive to deliver clinical care that is fair, equitable, and just. This strong ethical commitment can sometimes blind genetic counselors to some of the justifiable criticisms leveled against them, such as conflicts of interest or bias against people with disabilities. It is very difficult for ethical people to acknowledge that their behavior and choices may be viewed by others as unethical or biased. Such blind spots are inherent in human nature. Rather than denying the validity of such criticisms, genetic counselors must learn to be able to accept criticism in positive ways and use it to improve the care provided to the patient community. This is necessary for genetic counseling to continue to be compatible with humanistic goals in the rapidly expanding and evolving field of genomic medicine.

This is easier said than done, but not impossible. Professional supervision, balanced and honest assessment of criticisms by nongenetic counselors, thoughtful and collegial discussion in conferences and scholarly articles, and open-minded meetings with critics in which differences can be discussed and solutions negotiated are some of the ways that the genetic counseling community can address criticism.

The future of genetic counseling and genomic medicine will likely be a mix of hope, uncertainty, change, painful failures, and profound achievements. Embryo editing with technologies such as CRISPR is just one example of the clinical and ethical challenges facing not only genetic counselors but also the entire planet. There is a justifiable concern for abuse, but also reason to be hopeful. Genetic counseling can continue to be a humanistic endeavor if genetic counselors do not lose sight of the goal of working to improve the lives of all of their patient and stay open to criticism when their practices deviate from this aim.