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A Disturbing Trend: Conscience Clauses Threaten Genetic Counseling

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Since the development of their field four decades ago, genetic counselors have sought to acquire greater professional standing and increase the likelihood of reimbursement for services through licensure. Currently, genetic counselors have secured licensure in 15 states and hope to achieve this legitimacy in all 50 states.

Acquiring professional recognition should not involve sacrificing core values. Yet this is precisely what is happening in several states where recently approved genetic counseling licensure bills contain "conscience clauses" that potentially curtail the ability of genetic counselors to practice in accordance with their professional ethical code.

In Nebraska, a licensure act passed last year shields genetic counselors who are unwilling to provide a client an abortion referral, even if such action would constitute the best medical option. This month Virginia passed a bill that allows genetic counselors to decline to "participate in counseling that conflicts with their deeply-held moral or religious beliefs," underscoring that such refusal "shall not form the basis for any claim of damages or for any disciplinary or recriminatory action."

In practice this means that a genetic counselor could reject a client because she or he is lesbian or gay, or because the counselor, for religious reasons, would not discuss the possibility of pregnancy termination based on genetic testing that reveals that a fetus has a severe or life-threatening condition. The first instance is a clear-cut case of social discrimination, and the second infringes on reproductive autonomy.

These conscience clauses are problematic for many reasons, not least of which is the fact that they violate the ethical guidelines of the profession's flagship organization, the National Society of Genetic Counselors. Notably, the first value listed in the NSGC's Code of Ethics in the section "Genetic Counselors and Their Clients" is to "serve those who seek services regardless of personal or external interests or biases."

Not only will the majority of genetic counselors find these new constraints anathema to the ethos of client-centered care, but they might induce unwanted déjà vu. In the 1970s and 1980s, genetic counselors expended much energy distancing themselves from assumptions and preconditions embedded in nascent human genetics. During these formative decades genetic counselors played an instrumental role in shifting the focus of genetic assessment away from a concern with the population or aggregate genetic disease burden, which had palpable eugenic overtones, to a focus on individual clients and their unique needs and medical situations. There is no need to relive the professional and ethical battles that helped to engender the profession's hallmark concept of "non-directiveness."

Conscience clauses, sometimes known as "refusal clauses," have constituted an important strategy of the pro-life, anti-abortion movement and date back to initial opposition to Roe v. Wade. On the heels of that decision, the U.S. Congress passed the Church Amendment, which states that public entities may not require that a health professional perform abortions or sterilizations if doing so would be contrary to his or her "religious beliefs and moral convictions."

Since then, the passage of additional federal laws and, at an increasing pace, state laws has resulted in an uneven national landscape in which a variety of providers and institutions can refuse to provide reproductive health services with little risk of financial or legal liability. Indeed, the case currently before the U.S. Supreme Court, Sibelius v. Hobby Lobby Stores Inc., involves a company contending that, as a matter of religious freedom, it should not be required to include contraception in its revamped ACA-compliant employee health care plan.

From another direction, the Catholic Church sanctions conscience clauses that impose significant limitations on the content of genetic counseling sessions. Catholic facilities account for 15 percent of hospital admissions (and this figure is rising as the church buys and consolidates clinics around the country), which in turn further restricts the reproductive health options available to women and their partners.

Conscience clauses place genetic counselors in an untenable predicament: State laws and hospital directives are in conflict with professional ethics and best practices.

As an expanding group of health care professionals whose skill set and expertise will be in higher demand as genomic medicine advances, genetic counselors should be valorized through state licensure. This, however, should not come at the Faustian cost of forfeiting core values.

Genetic counselors must be assured an environment in which they can offer comprehensive and genuine client-centered care, premised on the belief that every interaction with a client -- whatever her socioeconomic or marital status, racial identity, social background, political beliefs, religious affiliations, or sexual orientation -- is devoid of undue influence or bias.