Punishing Health Care Providers for Treating Terrorists by leonard s. ru benstein
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magine that an American physician volunteered to treat wounded children through the Ministry of Health in Gaza, controlled by Hamas. Or that a Palestinian nurse attending to injured fighters in Gaza spoke out against the firing of rockets into Israel, was threatened with arrest, and sought asylum in the United States. Under U.S. law, the doctor could be subject to prosecution, and the nurse could be denied asylum—in the first case, because she provided medical care under the direction or control of a designated terrorist organization; in the second, because he knowingly provided care to a member of a terrorist organization. The question of whether a terrorist is entitled to medical care, though largely theoretical, has generated considerable discussion, with near unanimity that there is no moral basis to refuse to treat.1 But whether a health professional can be punished for providing medical care either to terrorists or under the auspices of a terrorist organization has received little attention from either a moral or legal perspective, although such situations arise throughout the world. Arrests and prosecutions of physicians and nurses for treating an alleged terrorist, enemy, or political opponent of the state are not uncommon. In the 1990s, Peru and Serbia arrested and prosecuted doctors for offering medical care to individuals deemed by the government to be terrorists.2 In Russia’s second war against Chechen rebels, Russia targeted doctors who treated wounded enemy soldiers.3 In 2012, Syria enacted a new antiterrorism law that effectively criminalized all medical aid to the opposition, leading to the arrest and imprisonment of hundreds of medical workers.4 In 2011, Bahrain prosecuted doctors and nurses for medical activities in connection with Arab Spring political protests, which were deemed acts of terrorism by the government. In 2014, Turkey enacted a law that criminalizes unauthorized provision of emergency medical care, a provision that is widely understood to be in response to physicians and nurses who provided medical care to demonstrators wounded during the
Leonard S. Rubenstein, “Punishing Health Care Providers for Treating Terrorists,” Hastings Center Report 45, no. 4 (2015): 13-16. DOI: 10.1002/hast.469 July-August 2015
2013 Gezi Park protests, persons also labeled terrorists by the government.5 As part of its legal response to the attacks of September 11, 2001, the United States broadened laws that prohibit support for terrorism. One criminal statute expands culpability for offering “material support,” interpreted to include medical care, under the direction or control of a foreign terrorist organization.6 Another criminal law punishes individuals for providing material support while knowing or intending that it be used in preparation for, the commission of, or concealment of a terrorist offense.7 These laws apply extraterritorially. A third law limits the availability of refugee status for an individual who earlier provided medical care in circumstances where he or she knew, or should have known, that the patient being treated committed or planned to commit a terrorist act or was affiliated with a terrorist organization.8 Professional associations and human rights organizations have condemned the arrest and prosecution of health providers based on the affiliations or conduct of their patients. But there has been little consideration of the moral justifications for laws that criminalize health services for patients who have committed or planned terrorist acts or are affiliated with a terrorist organization. Foundational Rights and Duties
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rinciples of justice demand that individuals have rights of access to health care without discrimination, whether in times of peace or armed conflict. Legally, in armed conflicts, whether the conflict is with another state or is internal, international humanitarian law requires all parties to a conflict to provide care to wounded and sick individuals, no matter what their affiliation or label and regardless of whether they previously participated in combat. Care decisions must be based on medical grounds alone. In times of peace, political violence, or war, human rights law imposes equivalent obligations on states to assure nondiscriminatory access to health care.9 The duty of physicians and other health professionals to act impartially, offering treatment irrespective of the patient’s H AS TI N GS C EN TE R RE P O RT
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In Syria, the designation of any opposition group as terrorists has led to the arrest of hundreds of physicians and nurses. race, ethnicity, ideology, or other nonmedical characteristics, is founded on principles of beneficence, preservation of life, and respect for persons.10 Caregivers may not deny care to people whose ideology or acts are abhorrent to them, as their duty is not based on the moral worth of particular patients.11 Denying care based on someone’s acts amounts to a form of punishment of individuals for their conduct, which is a responsibility of the state, not the physician. As Justin List puts it, “[J]ustice for crimes is not to be handed out in the clinical setting by physicians.”12 These moral principles are reflected in professional ethical codes. In the past, the principle of physician autonomy was generally interpreted to permit declining an individual as a patient. But U.S. and global ethical codes have progressively limited the patient characteristics that constitute permissible grounds for refusing to treat. The World Medical Association has promulgated guidelines and a code of conduct in the context of conflict and other situations of violence. These guidelines hold that the physician’s duty to treat people with humanity and respect prohibits discrimination not only on account of race, gender, and other immutable characteristics but also on the basis of political affiliation, including when a person is considered an “enemy.”13 In medical emergencies, professional organizations have advised that the obligation to treat is, if anything, stronger, no matter how repugnant the patient’s conduct.14 At the same time, states have a moral responsibility to protect the lives of their citizens from violence inflicted from external threats, whether from infectious agents, crime, invasion, or terrorism. As a result, states can impose burdens on the citizenry, including demanding that, through armed forces, citizens sacrifice their lives in the defense of the nation, although in doing so they must respect principles of proportionality (avoiding excessive harm) and utility (producing more harm than the act seeks to avoid).15 Judgments about when an infringement on life or health is morally legitimate turn on criteria such as the severity of the threat to the existence or territorial integrity of the nation, the proportionality between means and ends, the nondiscriminatory nature of the restriction, and the use of least restrictive means for achieving the end sought.16 A similar approach is reflected in criteria used to determine whether human rights may be infringed on national security grounds.17 Punishment for Material Support
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he U.S. executive branch, with support from the courts, has embraced the view that the government has broad
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powers to punish material support for terrorism. In an asylum case involving a health worker who, under compulsion, treated Maoist rebels in Nepal, the Board of Immigration Appeals of the Department of Justice held that medical care was just like any other form of material support for terrorism (the case was not appealed further). The board stated that the health worker’s actions “that may have saved the lives of Maoists rebels clearly furthered the ability of the Maoists to continue in pursuit of their terrorist activities,”18 and the reasoning appeared to be that health care interventions enable terrorists to recover from wounds or sickness so that they can engage in violent actions that threaten the nation. In moral terms, one could read the case as reasoning that criminalizing health care respects principles of proportionality and utility in imposing a relatively small restriction on medical practice to achieve the end sought—preventing terrorists from inflicting harm. The U.S. Supreme Court has recognized that where law infringes on basic liberties on the grounds of national security, a demanding standard of review is required that judges the relationship between the ends sought and the means used.19 But it has given the government wide latitude in fitting means to ends, holding that, since national security “is an area where information can be difficult to obtain and the impact of certain conduct difficult to assess . . . the government, when seeking to prevent imminent harms in the context of international affairs and national security, is not required to conclusively link all the pieces in the puzzle before we grant weight to its empirical conclusions” (2727-28). A successful legal challenge to material support laws therefore appears unlikely. In defending the application of material support laws to health providers on national security grounds, an analogy might be made to physicians’ obligation to breach patient confidentiality to protect a third party from harm. In the 1976 Tarasoff case, which imposed a duty on therapists to report a patient’s threat of harm to a third party, the California Supreme Court famously stated that the privilege not to testify against one’s patient “ends where the public peril begins.”20 In the case of terrorism, the peril to the public is arguably much greater than it was in Tarasoff, which involved a single potential victim, and so justifies punishment of individuals who, by offering medical care, enable terrorists to inflict terrible harms. A close examination of material support laws, however, reveals that their application to health care providers cannot be morally justified. With respect to the law that prohibits medical care under the direction or control of a terrorist July-August 2015
organization, there is a very poor fit between means and ends, and the law is far more restrictive than warranted to achieve the objective. By focusing on affiliation with the entity that directs or controls care rather than individuals who commit terrorist acts, the law reaches far beyond the objective of preventing terrorists from being in sufficient health to commit violent acts. Instead, it extends to all people treated under the auspices of the entity. Thus, as noted above, an American physician could be prosecuted under the law for treating wounded or traumatized children in Gaza under Hamas’s authority. Equally problematic, over the past decade or more, governments throughout the world have applied the terrorist organization label broadly, with the result that criminalization based on the sponsor of the care invites prosecutions that have nothing to do with providing care to someone who has committed or is likely to commit a terrorist act. In Syria, the designation of any opposition group as terrorists has led to the arrest of hundreds of physicians and nurses who provide services to hundreds of thousands of people. Further, while the law excludes from culpability individuals working independently of a designated terrorist organization, it chills access to care because, in conflict regions, designated terrorist organizations may exercise control over territory, dissuading health providers from working in areas controlled by them.21 The other type of criminal law focuses on the patient, not the organizations. It outlaws knowingly providing material support for the purpose of preparing, carrying out, or concealing a criminal act. This approach escapes the first problem but is still morally unacceptable. As noted above, principles of justice, as well as human rights laws, require availability of medical care regardless of the nature of one’s conduct or affiliations. The laws of the United States and most other countries reflect these principles in not prohibiting a person from receiving health care based on conduct, affiliation, or planned terrorist acts. Legally forbidding a health provider from offering care, however, amounts to denying care to the patient. That is why international humanitarian law, which focuses on assuring care to the sick and wounded, requires all parties to a conflict to refrain from punishing persons engaged in medical activities for acts required by medical ethics.22 Recognition that no exclusion from treatment based on acts or affiliations is morally permissible shows, too, why the Tarasoff analogy is flawed. The Tarasoff decision did not require the therapist to refrain from treatment, but to report threats of harm to third parties. A similar law that required a provider to report a patient’s intent to commit violent acts against others would be defensible on the same grounds. On the other hand, nothing in the Tarasoff reasoning warrants punishment for having treated the individual making the threat. That the United States is leading the way in criminalizing the act of providing health care to people deemed terrorists contradicts core values and undermines its global leadership July-August 2015
in health. Despite the apparent national security rationales for these laws, they cannot be justified morally. 1. See a collection of essays in American Journal of Bioethics 9, no. 10 (2009). 2. Physicians for Human Rights, “Perilous Medicine: The Legacy of Oppression and Conflict on Health in Kosovo,” 2009, at https:// s3.amazonaws.com/PHR_Reports/perilous-medicineKosovo-legacy. pdf; De La Cruz-Flores v. Peru, Inter-American Court of Human Rights, Judgment of Nov. 18, 2004, at http://www.corteidh.or.cr/ docs/casos/articulos/seriec_115_ing.pdf. 3. Physicians for Human Rights, Endless Brutality: War Crimes in Chechnya (Cambridge, MA: Physicians for Human Rights, 2001), https://s3.amazonaws.com/PHR_Reports/chechnya-endless-brutality-report2001.pdf. 4. United Nations Human Rights Council, “Assault on Medical Care in Syria: Report of the Independent International Commission on the Syrian Arab Republic,” A/HRC/24/CRP.2 2013, at 5, at http:// www.ohchr.org/EN/HRBodies/HRC/IICISyria/Pages/IndependentInternationalCommission.aspx. 5. S. Arie, “New Turkish Law Forbids Medical Treatment of Injured Protesters without State Permission,” BMJ 348 (2014): g82, at http:// www.bmj.com/content/348/bmj.g82. 6. 18 U.S. Code §§2339B. 7. 18 U.S. Code §§2339A. 8. 8 U.S. Code §1182(a)(3)(B)(iv)(VI). 9. United Nations General Assembly, Right of Everyone to the Highest Attainable Standard of Physical and Mental Health, A/68/297 2013, at http://daccess-dds-ny.un.org/doc/UNDOC/GEN/ N13/422/97/PDF/N1342297.pdf?OpenElement; K. A. Footer and L. S. Rubenstein, “A Human Rights Approach to Health Care in Conflict,” International Review of the Red Cross 95, no. 889 (2014): 167-87. 10. T. L. Beauchamp and L. B. McCullough, Medical Ethics: The Moral Responsibilities of Physicians (Englewood Cliffs, NJ; Prentice Hall, 1984); E. D. Pellegrino and D. C. Thomasma, The Virtues in Medical Practice (Oxford: Oxford University Press: 1993), 36-37. 11. C. Lepora, M. Danis, and A. Wertheimer, “No Exceptionalism Needed to Treat Terrorists,” American Journal of Bioethics 9, no. 10 (2009): 53-54; J. Lunstroth, “The Obligations of Health Workers to ‘Terrorists,’” American Journal of Bioethics 9, no. 10 (2009): 45-48; I Brassington, “Separating the ‘Rights of ’ and ‘Justice for’ Bombers,” American Journal of Bioethics 9, no. 10 (2009): 59-60. 12. J. List, “Medical Neutrality and Political Activism: Physicians’ Roles in Conflict Situations,” in Physicians at War, ed. F. Allhoff (Springer; 2008): 237-53, at 240. 13. World Medical Association, Regulations in Time of Armed Conflict and Other Situations of Violence, revised 2012, at http://www.wma. net/en/30publications/10policies/a20/. 14. American Academy of Emergency Physicians, “Code of Ethics for Emergency Physicians,” revised 2011, http://www.acep.org/ Clinical---Practice-Management/Code-of-Ethics-for-Emergency-Physicians/. 15. M. Gross, Bioethics and Armed Conflict (Cambridge, MA: MIT Press, 2006). 16. J. F. Childress et al. “Public Health Ethics: Mapping the Terrain,” Journal of Law Medicine & Ethics 30, no. 2 (2002):169-77. 17. United Nations, Economic and Social Council, “Siracusa Principles on the Limitation and Derogation Provisions in the International Covenant on Civil and Political Rights,” U.N. Doc. E/CN.4/1985/4, Annex (1985), http://www1.umn.edu/humanrts/instree/siracusaprinciples.html. 18. U.S. Department of Justice, Board of Immigration Appeals, in re BT, September 4, 2008. 19. Holder v. Humanitarian Law Project. 130 S. Ct. 2705 (2010). 20. Tarasoff v. Regents of University of California, 17 Cal.3d 425, 442 (1976).
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21. K. Footer et al., “On the Frontline of Eastern Burma’s Chronic Conflict—Listening to the Voices of Local Health Workers,” Social Science and Medicine 120 (2014): 378-86; N. K. Modirzadeh, D. A. Lewis, and C. Bruderlein, “Humanitarian Engagement under CounterTerrorism: A Conflict of Norms and the Emerging Policy Landscape,” International Review of the Red Cross 93, no. 883 (2011): 623-47; S. Pantuliano et al., “Counterterrorism and Humanitarian Action,” HPG Policy Brief 43 (2011), at http://www.odi.org.uk/sites/odi.org.uk/files/ odi-assets/publications-opinion-files/7347.pdf.
22. Additional Protocol 1 to the Geneva Conventions, Art. 16. 1977, at https://www.icrc.org/applic/ihl/ihl.nsf/Article.xsp?action=op enDocument&documentId=B0BF1D4A2800D97FC12563CD005 1D841; Additional Protocol 2 to the Geneva Conventions, Article 10. 1977, at https://www.icrc.org/applic/ihl/ihl.nsf/Article.xsp?action=ope nDocument&documentId=D321BEBD8192C5E0C12563CD0051E 85A.
Drifting Away from Informed Consent in the Era of Personalized Medicine by erik parens
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he price of sequencing all the DNA in a person’s genome is falling so fast that, according to one biotech leader, soon it won’t cost much more than flushing a toilet.1 Getting all that genomic data at an ever-lower cost excites the imaginations not only of biotech investors and researchers but also of the President and many members of Congress.2 They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes. Since the 1990 start of the project to map the human genome, sequencing advocates have been predicting our imminent arrival in the Promised Land of Health. In 2000, when Francis Collins shared in announcing the completion of a first draft of a human genome sequence, he said that we now possessed the “book of life.”3 Soon, he foresaw, we would find single misspelled words in that book that would be the keys to diagnosing, treating, and preventing both common and rare diseases. Since 2000, researchers have actually achieved some stunning successes in personalized medicine, including making some definitive diagnoses that have led to the treatment of rare diseases,4 developing new medications targeted to treat rare diseases,5 and making certain drug-prescription decisions based on knowledge of genomic variants.6 However, those successes, which have primarily involved rare diseases or rare forms of common diseases like cancer, have thus far been fewer than anyone at risk of disease would hope.7 At one time, it seemed that using genomics to explain common diseases would be as straightforward as using it to explain some rare ones, but using genomics to diagnose and treat common Erik Parens, “Drifting Away from Informed Consent in the Era of Personalized Medicine,” Hastings Center Report 45, no. 4 (2015): 16-20. DOI: 10.1002/ hast.470
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diseases is far harder than was anticipated.8 The metaphor of reading the genomic book and finding the misspelled words didn’t begin to capture the complexity of the task. Indeed, when the National Research Council announced in 2011 that it would abandon the label “personalized medicine” and adopt “precision medicine” instead,9 it appeared to be, among other things, trying to escape the simplification and hyperbole built into the early promises. The White House and the National Institutes of Health (NIH) now seem eager to make the same terminological transition.10 But the new name “precision medicine” should not distract us from the fact that the genomic information it depends on is more complex, uncertain, and ambiguous than anyone had hoped. Nor should it distract us from an important ethical point. Unfortunately, several developments of the last fifteen years suggest that, in our excitement about the technological capacity to gather genomic data at an ever-lower cost, we are drifting away from what has long been a basic ethical commitment: to offer persons a process that enables them to provide informed consent before they or anyone else accesses their genetic information. What’s so important about informed consent, anyway? The study of heredity, which today we call genetics, used to be called eugenics. In the early part of the twentieth century in the United States and England, the term “eugenics” had a positive valence and enjoyed the support of progressive thinkers like Margaret Sanger and George Barnard Shaw. At the time, it seemed obvious that weeding out the “unfit” would be a benefit to families and the state. Shortly after the end of World War II, however, with the growth of the field of genetics as we know it today, medical geneticists and genetic counselors sought to distance themselves from their predecessors’ ideas about helping prospective parents make July-August 2015
I
magine that an American physician volunteered to treat wounded children through the Ministry of Health in Gaza, controlled by Hamas. Or that a Palestinian nurse attending to injured fighters in Gaza spoke out against the firing of rockets into Israel, was threatened with arrest, and sought asylum in the United States. Under U.S. law, the doctor could be subject to prosecution, and the nurse could be denied asylum—in the first case, because she provided medical care under the direction or control of a designated terrorist organization; in the second, because he knowingly provided care to a member of a terrorist organization. The question of whether a terrorist is entitled to medical care, though largely theoretical, has generated considerable discussion, with near unanimity that there is no moral basis to refuse to treat.1 But whether a health professional can be punished for providing medical care either to terrorists or under the auspices of a terrorist organization has received little attention from either a moral or legal perspective, although such situations arise throughout the world. Arrests and prosecutions of physicians and nurses for treating an alleged terrorist, enemy, or political opponent of the state are not uncommon. In the 1990s, Peru and Serbia arrested and prosecuted doctors for offering medical care to individuals deemed by the government to be terrorists.2 In Russia’s second war against Chechen rebels, Russia targeted doctors who treated wounded enemy soldiers.3 In 2012, Syria enacted a new antiterrorism law that effectively criminalized all medical aid to the opposition, leading to the arrest and imprisonment of hundreds of medical workers.4 In 2011, Bahrain prosecuted doctors and nurses for medical activities in connection with Arab Spring political protests, which were deemed acts of terrorism by the government. In 2014, Turkey enacted a law that criminalizes unauthorized provision of emergency medical care, a provision that is widely understood to be in response to physicians and nurses who provided medical care to demonstrators wounded during the
Leonard S. Rubenstein, “Punishing Health Care Providers for Treating Terrorists,” Hastings Center Report 45, no. 4 (2015): 13-16. DOI: 10.1002/hast.469 July-August 2015
2013 Gezi Park protests, persons also labeled terrorists by the government.5 As part of its legal response to the attacks of September 11, 2001, the United States broadened laws that prohibit support for terrorism. One criminal statute expands culpability for offering “material support,” interpreted to include medical care, under the direction or control of a foreign terrorist organization.6 Another criminal law punishes individuals for providing material support while knowing or intending that it be used in preparation for, the commission of, or concealment of a terrorist offense.7 These laws apply extraterritorially. A third law limits the availability of refugee status for an individual who earlier provided medical care in circumstances where he or she knew, or should have known, that the patient being treated committed or planned to commit a terrorist act or was affiliated with a terrorist organization.8 Professional associations and human rights organizations have condemned the arrest and prosecution of health providers based on the affiliations or conduct of their patients. But there has been little consideration of the moral justifications for laws that criminalize health services for patients who have committed or planned terrorist acts or are affiliated with a terrorist organization. Foundational Rights and Duties
P
rinciples of justice demand that individuals have rights of access to health care without discrimination, whether in times of peace or armed conflict. Legally, in armed conflicts, whether the conflict is with another state or is internal, international humanitarian law requires all parties to a conflict to provide care to wounded and sick individuals, no matter what their affiliation or label and regardless of whether they previously participated in combat. Care decisions must be based on medical grounds alone. In times of peace, political violence, or war, human rights law imposes equivalent obligations on states to assure nondiscriminatory access to health care.9 The duty of physicians and other health professionals to act impartially, offering treatment irrespective of the patient’s H AS TI N GS C EN TE R RE P O RT
13
In Syria, the designation of any opposition group as terrorists has led to the arrest of hundreds of physicians and nurses. race, ethnicity, ideology, or other nonmedical characteristics, is founded on principles of beneficence, preservation of life, and respect for persons.10 Caregivers may not deny care to people whose ideology or acts are abhorrent to them, as their duty is not based on the moral worth of particular patients.11 Denying care based on someone’s acts amounts to a form of punishment of individuals for their conduct, which is a responsibility of the state, not the physician. As Justin List puts it, “[J]ustice for crimes is not to be handed out in the clinical setting by physicians.”12 These moral principles are reflected in professional ethical codes. In the past, the principle of physician autonomy was generally interpreted to permit declining an individual as a patient. But U.S. and global ethical codes have progressively limited the patient characteristics that constitute permissible grounds for refusing to treat. The World Medical Association has promulgated guidelines and a code of conduct in the context of conflict and other situations of violence. These guidelines hold that the physician’s duty to treat people with humanity and respect prohibits discrimination not only on account of race, gender, and other immutable characteristics but also on the basis of political affiliation, including when a person is considered an “enemy.”13 In medical emergencies, professional organizations have advised that the obligation to treat is, if anything, stronger, no matter how repugnant the patient’s conduct.14 At the same time, states have a moral responsibility to protect the lives of their citizens from violence inflicted from external threats, whether from infectious agents, crime, invasion, or terrorism. As a result, states can impose burdens on the citizenry, including demanding that, through armed forces, citizens sacrifice their lives in the defense of the nation, although in doing so they must respect principles of proportionality (avoiding excessive harm) and utility (producing more harm than the act seeks to avoid).15 Judgments about when an infringement on life or health is morally legitimate turn on criteria such as the severity of the threat to the existence or territorial integrity of the nation, the proportionality between means and ends, the nondiscriminatory nature of the restriction, and the use of least restrictive means for achieving the end sought.16 A similar approach is reflected in criteria used to determine whether human rights may be infringed on national security grounds.17 Punishment for Material Support
T
he U.S. executive branch, with support from the courts, has embraced the view that the government has broad
14 HASTI N G S C E N T E R R E P ORT
powers to punish material support for terrorism. In an asylum case involving a health worker who, under compulsion, treated Maoist rebels in Nepal, the Board of Immigration Appeals of the Department of Justice held that medical care was just like any other form of material support for terrorism (the case was not appealed further). The board stated that the health worker’s actions “that may have saved the lives of Maoists rebels clearly furthered the ability of the Maoists to continue in pursuit of their terrorist activities,”18 and the reasoning appeared to be that health care interventions enable terrorists to recover from wounds or sickness so that they can engage in violent actions that threaten the nation. In moral terms, one could read the case as reasoning that criminalizing health care respects principles of proportionality and utility in imposing a relatively small restriction on medical practice to achieve the end sought—preventing terrorists from inflicting harm. The U.S. Supreme Court has recognized that where law infringes on basic liberties on the grounds of national security, a demanding standard of review is required that judges the relationship between the ends sought and the means used.19 But it has given the government wide latitude in fitting means to ends, holding that, since national security “is an area where information can be difficult to obtain and the impact of certain conduct difficult to assess . . . the government, when seeking to prevent imminent harms in the context of international affairs and national security, is not required to conclusively link all the pieces in the puzzle before we grant weight to its empirical conclusions” (2727-28). A successful legal challenge to material support laws therefore appears unlikely. In defending the application of material support laws to health providers on national security grounds, an analogy might be made to physicians’ obligation to breach patient confidentiality to protect a third party from harm. In the 1976 Tarasoff case, which imposed a duty on therapists to report a patient’s threat of harm to a third party, the California Supreme Court famously stated that the privilege not to testify against one’s patient “ends where the public peril begins.”20 In the case of terrorism, the peril to the public is arguably much greater than it was in Tarasoff, which involved a single potential victim, and so justifies punishment of individuals who, by offering medical care, enable terrorists to inflict terrible harms. A close examination of material support laws, however, reveals that their application to health care providers cannot be morally justified. With respect to the law that prohibits medical care under the direction or control of a terrorist July-August 2015
organization, there is a very poor fit between means and ends, and the law is far more restrictive than warranted to achieve the objective. By focusing on affiliation with the entity that directs or controls care rather than individuals who commit terrorist acts, the law reaches far beyond the objective of preventing terrorists from being in sufficient health to commit violent acts. Instead, it extends to all people treated under the auspices of the entity. Thus, as noted above, an American physician could be prosecuted under the law for treating wounded or traumatized children in Gaza under Hamas’s authority. Equally problematic, over the past decade or more, governments throughout the world have applied the terrorist organization label broadly, with the result that criminalization based on the sponsor of the care invites prosecutions that have nothing to do with providing care to someone who has committed or is likely to commit a terrorist act. In Syria, the designation of any opposition group as terrorists has led to the arrest of hundreds of physicians and nurses who provide services to hundreds of thousands of people. Further, while the law excludes from culpability individuals working independently of a designated terrorist organization, it chills access to care because, in conflict regions, designated terrorist organizations may exercise control over territory, dissuading health providers from working in areas controlled by them.21 The other type of criminal law focuses on the patient, not the organizations. It outlaws knowingly providing material support for the purpose of preparing, carrying out, or concealing a criminal act. This approach escapes the first problem but is still morally unacceptable. As noted above, principles of justice, as well as human rights laws, require availability of medical care regardless of the nature of one’s conduct or affiliations. The laws of the United States and most other countries reflect these principles in not prohibiting a person from receiving health care based on conduct, affiliation, or planned terrorist acts. Legally forbidding a health provider from offering care, however, amounts to denying care to the patient. That is why international humanitarian law, which focuses on assuring care to the sick and wounded, requires all parties to a conflict to refrain from punishing persons engaged in medical activities for acts required by medical ethics.22 Recognition that no exclusion from treatment based on acts or affiliations is morally permissible shows, too, why the Tarasoff analogy is flawed. The Tarasoff decision did not require the therapist to refrain from treatment, but to report threats of harm to third parties. A similar law that required a provider to report a patient’s intent to commit violent acts against others would be defensible on the same grounds. On the other hand, nothing in the Tarasoff reasoning warrants punishment for having treated the individual making the threat. That the United States is leading the way in criminalizing the act of providing health care to people deemed terrorists contradicts core values and undermines its global leadership July-August 2015
in health. Despite the apparent national security rationales for these laws, they cannot be justified morally. 1. See a collection of essays in American Journal of Bioethics 9, no. 10 (2009). 2. Physicians for Human Rights, “Perilous Medicine: The Legacy of Oppression and Conflict on Health in Kosovo,” 2009, at https:// s3.amazonaws.com/PHR_Reports/perilous-medicineKosovo-legacy. pdf; De La Cruz-Flores v. Peru, Inter-American Court of Human Rights, Judgment of Nov. 18, 2004, at http://www.corteidh.or.cr/ docs/casos/articulos/seriec_115_ing.pdf. 3. Physicians for Human Rights, Endless Brutality: War Crimes in Chechnya (Cambridge, MA: Physicians for Human Rights, 2001), https://s3.amazonaws.com/PHR_Reports/chechnya-endless-brutality-report2001.pdf. 4. United Nations Human Rights Council, “Assault on Medical Care in Syria: Report of the Independent International Commission on the Syrian Arab Republic,” A/HRC/24/CRP.2 2013, at 5, at http:// www.ohchr.org/EN/HRBodies/HRC/IICISyria/Pages/IndependentInternationalCommission.aspx. 5. S. Arie, “New Turkish Law Forbids Medical Treatment of Injured Protesters without State Permission,” BMJ 348 (2014): g82, at http:// www.bmj.com/content/348/bmj.g82. 6. 18 U.S. Code §§2339B. 7. 18 U.S. Code §§2339A. 8. 8 U.S. Code §1182(a)(3)(B)(iv)(VI). 9. United Nations General Assembly, Right of Everyone to the Highest Attainable Standard of Physical and Mental Health, A/68/297 2013, at http://daccess-dds-ny.un.org/doc/UNDOC/GEN/ N13/422/97/PDF/N1342297.pdf?OpenElement; K. A. Footer and L. S. Rubenstein, “A Human Rights Approach to Health Care in Conflict,” International Review of the Red Cross 95, no. 889 (2014): 167-87. 10. T. L. Beauchamp and L. B. McCullough, Medical Ethics: The Moral Responsibilities of Physicians (Englewood Cliffs, NJ; Prentice Hall, 1984); E. D. Pellegrino and D. C. Thomasma, The Virtues in Medical Practice (Oxford: Oxford University Press: 1993), 36-37. 11. C. Lepora, M. Danis, and A. Wertheimer, “No Exceptionalism Needed to Treat Terrorists,” American Journal of Bioethics 9, no. 10 (2009): 53-54; J. Lunstroth, “The Obligations of Health Workers to ‘Terrorists,’” American Journal of Bioethics 9, no. 10 (2009): 45-48; I Brassington, “Separating the ‘Rights of ’ and ‘Justice for’ Bombers,” American Journal of Bioethics 9, no. 10 (2009): 59-60. 12. J. List, “Medical Neutrality and Political Activism: Physicians’ Roles in Conflict Situations,” in Physicians at War, ed. F. Allhoff (Springer; 2008): 237-53, at 240. 13. World Medical Association, Regulations in Time of Armed Conflict and Other Situations of Violence, revised 2012, at http://www.wma. net/en/30publications/10policies/a20/. 14. American Academy of Emergency Physicians, “Code of Ethics for Emergency Physicians,” revised 2011, http://www.acep.org/ Clinical---Practice-Management/Code-of-Ethics-for-Emergency-Physicians/. 15. M. Gross, Bioethics and Armed Conflict (Cambridge, MA: MIT Press, 2006). 16. J. F. Childress et al. “Public Health Ethics: Mapping the Terrain,” Journal of Law Medicine & Ethics 30, no. 2 (2002):169-77. 17. United Nations, Economic and Social Council, “Siracusa Principles on the Limitation and Derogation Provisions in the International Covenant on Civil and Political Rights,” U.N. Doc. E/CN.4/1985/4, Annex (1985), http://www1.umn.edu/humanrts/instree/siracusaprinciples.html. 18. U.S. Department of Justice, Board of Immigration Appeals, in re BT, September 4, 2008. 19. Holder v. Humanitarian Law Project. 130 S. Ct. 2705 (2010). 20. Tarasoff v. Regents of University of California, 17 Cal.3d 425, 442 (1976).
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21. K. Footer et al., “On the Frontline of Eastern Burma’s Chronic Conflict—Listening to the Voices of Local Health Workers,” Social Science and Medicine 120 (2014): 378-86; N. K. Modirzadeh, D. A. Lewis, and C. Bruderlein, “Humanitarian Engagement under CounterTerrorism: A Conflict of Norms and the Emerging Policy Landscape,” International Review of the Red Cross 93, no. 883 (2011): 623-47; S. Pantuliano et al., “Counterterrorism and Humanitarian Action,” HPG Policy Brief 43 (2011), at http://www.odi.org.uk/sites/odi.org.uk/files/ odi-assets/publications-opinion-files/7347.pdf.
22. Additional Protocol 1 to the Geneva Conventions, Art. 16. 1977, at https://www.icrc.org/applic/ihl/ihl.nsf/Article.xsp?action=op enDocument&documentId=B0BF1D4A2800D97FC12563CD005 1D841; Additional Protocol 2 to the Geneva Conventions, Article 10. 1977, at https://www.icrc.org/applic/ihl/ihl.nsf/Article.xsp?action=ope nDocument&documentId=D321BEBD8192C5E0C12563CD0051E 85A.
Drifting Away from Informed Consent in the Era of Personalized Medicine by erik parens
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he price of sequencing all the DNA in a person’s genome is falling so fast that, according to one biotech leader, soon it won’t cost much more than flushing a toilet.1 Getting all that genomic data at an ever-lower cost excites the imaginations not only of biotech investors and researchers but also of the President and many members of Congress.2 They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes. Since the 1990 start of the project to map the human genome, sequencing advocates have been predicting our imminent arrival in the Promised Land of Health. In 2000, when Francis Collins shared in announcing the completion of a first draft of a human genome sequence, he said that we now possessed the “book of life.”3 Soon, he foresaw, we would find single misspelled words in that book that would be the keys to diagnosing, treating, and preventing both common and rare diseases. Since 2000, researchers have actually achieved some stunning successes in personalized medicine, including making some definitive diagnoses that have led to the treatment of rare diseases,4 developing new medications targeted to treat rare diseases,5 and making certain drug-prescription decisions based on knowledge of genomic variants.6 However, those successes, which have primarily involved rare diseases or rare forms of common diseases like cancer, have thus far been fewer than anyone at risk of disease would hope.7 At one time, it seemed that using genomics to explain common diseases would be as straightforward as using it to explain some rare ones, but using genomics to diagnose and treat common Erik Parens, “Drifting Away from Informed Consent in the Era of Personalized Medicine,” Hastings Center Report 45, no. 4 (2015): 16-20. DOI: 10.1002/ hast.470
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diseases is far harder than was anticipated.8 The metaphor of reading the genomic book and finding the misspelled words didn’t begin to capture the complexity of the task. Indeed, when the National Research Council announced in 2011 that it would abandon the label “personalized medicine” and adopt “precision medicine” instead,9 it appeared to be, among other things, trying to escape the simplification and hyperbole built into the early promises. The White House and the National Institutes of Health (NIH) now seem eager to make the same terminological transition.10 But the new name “precision medicine” should not distract us from the fact that the genomic information it depends on is more complex, uncertain, and ambiguous than anyone had hoped. Nor should it distract us from an important ethical point. Unfortunately, several developments of the last fifteen years suggest that, in our excitement about the technological capacity to gather genomic data at an ever-lower cost, we are drifting away from what has long been a basic ethical commitment: to offer persons a process that enables them to provide informed consent before they or anyone else accesses their genetic information. What’s so important about informed consent, anyway? The study of heredity, which today we call genetics, used to be called eugenics. In the early part of the twentieth century in the United States and England, the term “eugenics” had a positive valence and enjoyed the support of progressive thinkers like Margaret Sanger and George Barnard Shaw. At the time, it seemed obvious that weeding out the “unfit” would be a benefit to families and the state. Shortly after the end of World War II, however, with the growth of the field of genetics as we know it today, medical geneticists and genetic counselors sought to distance themselves from their predecessors’ ideas about helping prospective parents make July-August 2015
