The Ethics of Becoming an Adult in a Health Research Setting in Africa

Bioethics in the News logoThis post is a part of our Bioethics in the News series

By Rose Mwangi

It is three years since the Centers for Disease Control and Prevention (CDC) reversed course to recommend that 11- to 12-year-old girls receive two doses of HPV vaccine to protect against cancers caused by human papillomavirus (HPV) infections, administered at least six months apart. This then overruled the previous “three dose” recommendation – but the CDC added the caveat that “teens and young adults who start the series later, at ages 15 through 26 years, will continue to need three doses of HPV vaccine to protect against cancer-causing HPV infection.”

When either recommending a health intervention or conducting research among adolescents (11-12 years), ethical principles require that in addition to the rightful consent processes, privacy and confidentiality especially should be observed. In that light, countries need to ensure that they meet some requirements of legal, ethical and moral issues pertaining to such situations. However, when it comes to adolescents, there commonly is some uncertainty about a proper ethical balance between protection from risks, confidentiality, privacy and the possible countervailing need for parental consent.

Global health
Image description: a black and silver stethoscope is curved around a small globe on a white background. Image source: Marco Verch/Flickr Creative Commons.

In resource-poor African settings, health access barriers are paramount, and they present major impediments to national and regional development across the continent. Additionally, before recommendations such as the aforementioned CDC HPV advice can be implemented, the pragmatic reality of the particular circumstances needs to be taken into consideration. There are other similar recommendations that are influenced by the vulnerabilities of women’s reproduction that fall into this same uncertainty.

A lack of clarity in ethical guidelines within African nations makes any attempt to follow the CDC recommendations a challenge. Moreover, there are additional dilemmas encountered when trying to follow basic ethical principles. These complexities influence the follow-up treatment for adolescents. In many cases it is the adolescent’s parents who take the primary role in decision making, oftentimes excluding those children in making decisions about their own health, and sometimes even denying them the potential benefits of health-preserving interventions. In essence, such African adolescents are left in a confused state of being both children and adults.

Using illustrative examples below, I draw from experience and insight in Tanzania. I make the case that the need for parental consent needs to be revisited so as to best customize the fit of that need to certain settings in reproductive health.

Contraceptive services
In many African countries the law is silent on the age a young person may access contraceptives. For example, according to a research conducted in Tanzania, 15 is the youngest age at which girls use contraceptives. Yet girls can obviously conceive before that age, and there is no law that prevents the usage of contraceptives at any age. Therefore, I argue that the default legal position requiring parental consent should be overruled; this would allow more freedom for young girls who wish to have access to reproductive control.

Age of consent for HIV testing
The age of consent for HIV testing is 16 years in Tanzania. Testing of persons under the age of 16 must be carried out with the consent of parents or legal guardians. However, the law does not stipulate a particular age at which an adolescent’s HIV status can be reported directly to him/her. It says only that test results are confidential and shall be shown only to the tested person with an exception of those under 18 years of age.

5461836185_bd78b5c075_b
Image description: The flag of Tanzania waves on a flagpole with blue sky in the background. Image source: Stefano C. Manservisi/Flickr Creative Commons.

Age of consent for Antiretroviral Therapy (ART)
In Tanzania, the 2001 national AIDS control policy provides universal access to ART. However, there are no explicit rules regarding either age specification or consent. The policy specifies that “people living with HIV and AIDS have the right to comprehensive health care and other social services including legal protection against all forms of discrimination and human rights abuse.” Parental consent for minors therefore should not have a role in accessing ART.

Age for consent and access for Pre-exposure Prophylaxis (PreP) and Post-exposure Prophylaxis (PEP)
In the same way that HIV-infected young people should have the rights and obligations to which they are entitled, so too should they have ready access to PreP and PEP. However, since no explicit rule is in place with regard to the age of consent, might we then safely/ethically assume that any person irrespective of age should have access to PreP? Similarly, it is not clear whether an adolescent should be allowed access to, or alternatively, be prohibited from PEP as the law and guidelines are silent on access for young persons.

Abortion and post-abortion care
In Tanzania, as in all other African countries, abortion is illegal. Tanzanian law is very clear on the consequences. However, there are no age-specific-rules regarding the age of consent for access to antenatal care (ANC). Indeed, when an adolescent becomes pregnant, regardless of the young woman’s age, health workers do not require parental consent for ANC. Therefore, I maintain that this dis-equal access amounts to a contradiction in the ethics of care.

Access to HPV vaccines and cervical cancer screening and treatment
Returning to my first point, globally, Tanzania has one of the highest incidences of cervical cancer. To address this health concern, the country recently has agreed to provide HPV vaccine for girls aged 9-13 years. What then is the parental role?

This message from CDC Director Tom Frieden, MD, MPH, in a 2016 press release could perhaps be viewed as clear and feasibly be implemented in a developed country:

“Safe, effective, and long-lasting protection against HPV cancers with two visits instead of three means more Americans will be protected from cancer. This recommendation will make it simpler for parents to get their children protected in time.”

This CDC claim about simplicity presumes that such parental consent would be forthcoming and would therefore equate to full HPV protection for the adolescent. But as I’ve pointed out, that might not be the case in Tanzania and other developing countries.  Perhaps we then should take a new approach in dealing with ethical issues related to accessing health in low-resource settings. Parents have an important role in ensuring the health of the adolescents, yet as I’ve demonstrated in the above, in those areas of a sensitive reproductive nature, the parental role may need to be secondary so as to ensure the adolescent’s health and well-being. If reproductive health interventions among adolescents are to succeed, perhaps we need to reach out directly to adolescents. When considering the daunting health risks adolescents face in low-resource settings, there is a need to lower access barriers and allow adolescents to consent on their own behalf. This then would give them the freedom to decide when and with whom they wish to share such sensitive information, and to directly benefit from available health interventions. This needed policy shift would place the ethics of becoming an adult in resource-challenged settings on another level.

Rose Mwangi photoMs. Rose Mwangi is a past beneficiary of an NIH Fogarty Fellowship at the Michigan State University Center for Ethics and Humanities in the Life Sciences. She has participated as an observer in Community Research IRBs at Michigan State University. Ms. Mwangi is very involved in Pan-African Bioethics and does research ethics in Tanzania. She has been involved in international clinical trials playing a key role in developing consent processes for rural and low literate communities; she has done important systematic qualitative studies advocating for social responsibility among global health researchers. Her recent milestone is leading the development and integration of Bioethics curriculum at Kilimanjaro Christian Medical University College (KCMUCo) as part of the European and Developing countries Partnership (EDCTP) in which UK and Tanzania are key stakeholders. Ms. Mwangi Co-Chairs the Institute Review Board (IRB) and is the Bioethics and Research Ethics instructor at KCMUCo and other medical institutions in Tanzania.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, July 11, 2019. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Click through to view references

Coworker Stigma Towards Lactating Mothers in the Workplace

bogdanlovis-crop-facLibby Bogdan-Lovis, MA, Assistant Director of the Center for Ethics and Humanities in the Life Sciences, was recently awarded funding for the project “Coworker Stigma Towards Lactating Mothers in the Workplace” by Science and Society at State (S3). Ms. Bogdan-Lovis is a team member on the collaborative project.

The project’s team is led by Mary Bresnahan of the Department of Communication, and members include Steven Haider of the Department of Economics, Joanne Goldbort of the College of Nursing, and Jie Zhuang of the Department of Communication.

Learn more about “Coworker Stigma Towards Lactating Mothers in the Workplace” on S3’s 2016-2017 Funded Projects page.

S3 is an interdisciplinary research institution at Michigan State University. Learn more about their mission.

Learn more about Libby Bogdan-Lovis’ research.

Signed Off: Unconsented-To Cesarean Section, A Quarter Century After A.C.

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. Visit this page for more information.

By Deborah Fisch, JD

The Texas case awaiting a decision from the Supreme Court heralds a new understanding of abortion rights in the line of cases from Roe (1973) through Casey (1992). However, another reproductive rights case about having children is also worth revisiting.

Uterus-dont-tread-on-me
Image description: text under an illustrated image of a uterus reads “don’t tread on me.” Image by Liz McDaniel.

The subject of In re A.C. (1990) is Angela Carder, a cancer patient in her last days of life, who refused a c-section at 26 weeks’ gestation. A physician unrelated to her case obtained a court order that authorized the hospital to proceed. Both Carder and the baby died within two days after surgery. An appeals court overturned the order, thereby setting a precedent for the right of a pregnant patient1 to refuse care. Although this precedent was limited to the District of Columbia, it was felt to be sufficiently influential to guide other state court decisions. In the intervening years, however, A.C. has often failed to provide the envisioned protection.

1 On language: this article refers to “pregnant patients” or “pregnant people,” with the goal of including those who give birth who do not identify as women.

Court-Ordered C-Section

Consent-graphic
Image description: text on a green colored background reads “It’s not consent if you make me afraid to say no.” Image by Liz McDaniel.

In 1999, Laura Pemberton sued a Florida hospital that procured a court order to forcibly transport her to the hospital for a c-section. The court’s analysis in finding against her was telling: in response to Pemberton’s claim that her constitutional rights had been violated to bodily integrity, refusal of treatment, and family privacy, the court conducted a cursory balancing test between Pemberton’s right to bodily autonomy and the safety of the fetus – in opposition to A.C., which explicitly rejected such a test. The opinion cited A.C. only once, to distinguish Pemberton’s situation from Carder’s: it claimed that because surgery did not risk Pemberton’s death, the hospital was justified in making the decision for her based on the relative risks to parent and fetus.

In addition to disregarding A.C., this finding turns the medico-legal doctrine of informed consent on its head. Under it, providers bear a duty to inform the patient of the risks and benefits of proposed treatments, while patients possess the right to consent or refuse, based on their risk perception as combined with their values and circumstances. If relative medical risk were the sole criterion for decision-making, as the Pemberton Court seems to suggest, a patient’s consent would be irrelevant.

The Pemberton Court justified its decision with Roe, which grants the state an interest in the fetus late in pregnancy – and thus, an ability to intervene. Roe, of course, addressed abortion rights, whereas Pemberton was a pregnant patient who wished to bear her child. This misapplied doctrine continues to follows the offspring of A.C.

Physician-Ordered C-Section

Court-ordered c-sections are now rare, perhaps thanks to A.C. More common are medical malpractice cases that challenge unconsented-to c-sections performed without court authority. Most such cases are still in process through the courts.

The New York case filed by Rinat Dray in April 2014 immediately made headlines. An on-call physician forcibly performed a c-section, noting (unwisely!) in Dray’s chart, “The woman has decisional capacity. I have decided to override her refusal to have a c-section.”

The A.C. Court reaffirmed that failure to provide informed consent is considered malpractice. However, patients like Dray are hard-pressed to find a willing attorney. The contingency fee model of financing requires the prospect of a significant damage award to offset the $50,000 average cost of mounting a case. Attorneys, judges, and juries alike generally do not acknowledge a recompensable injury when both parent and baby emerge from birth alive and nominally healthy. Sadly, Dray may have succeeded in bringing her case to court in part because she suffered an additional physical injury during surgery.

Physician-Coerced C-Section

ScarboroughSwitzer_Lindsay Askins
Image description: Lindsay Scarborough Switzer is seated on a couch with her hands in her lap, looking directly at the camera. Image by Lindsay Askins/spotofserendipity.com.

A refinement on c-sections performed without consent are those in which consent was obtained by coercion. New Jersey attorney Lindsay Scarborough Switzer was already in the pushing phase of her son’s birth when the on-call physician arrived and abruptly demanded a c-section. After the physician warned of brain-damage to the baby, threatened calls to a magistrate to compel the surgery, withheld requested pain medication, and alluded to a possible removal of Switzer’s older child by child welfare services, Switzer finally signed the consent form that was put in front of her.

Switzer is a healthy, educated, determined attorney, who was attended in labor by her husband, a nurse-midwife, and a doula. It is difficult to imagine a patient better situated to hold out against coercion. That she could not indicates that patients in labor are particularly vulnerable to this sort of intimidation, as perhaps may be better understood by considering coercion in sexual assault. Switzer made the full records of her case available to the public before it was settled in late 2015.

Michigan Law on Unconsented-To C-Section

260px-Seal_of_Michigan.svg
Image description: Michigan state seal. Public domain image.

Although Michigan statute does not grant child welfare authorities jurisdiction over children not yet born, the state’s interpretation of relevant case law suggests that when a fetus is believed to be in danger, that barrier may be demolished. A 1987 bioethics article explored several Michigan cases, one of which had been explored in depth in 1984. The possibility of court-ordered c-sections in Michigan is real; the existence of coercive c-sections is already a reality.

Conclusion

pregnant-woman-silhouette-md
Image description: an illustrated silhouette of a pregnant person. Image source.

In spite of the legal authority of A.C., the right of competent parents to refuse surgery is often compromised, and their ability to seek redress is limited. Those who reach court are members of relatively privileged classes; what does this mean for everyone else?

By asking these questions, this article does not suggest we vilify physicians or deify patients; we are all influenced by the systems in which we live and work – and give birth. Extensive practice guidelines and other resources are in place to support physicians with concerns about possible conflict between patient autonomy rights and physician duty to patients. Institutions ranging from hospitals to the courts must reinforce the policy that the best decision-maker for a potential child is its parent, particularly the one in whose body it resides.

deb-fischDeborah Fisch is a Michigan attorney with a solo practice that offers defense of health care providers against state disciplinary actions. She is also employed at AwakenMichigan: Reproductive and Sexual Justice Project. Her interest in childbirth and maternity care is expressed through her legislative work on midwife licensure through Friends of Michigan Midwives, her legal advocacy and organizational efforts through Birth Rights Bar Association, and her intermittent pronouncements at Mama’s Got a Plan. She was a contributing author to the amicus curiae brief submitted by Human Rights in Childbirth for the Rinat Dray case.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, April 21, 2016. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Click through to view references.

University of Michigan Professor Lisa Harris will give online lecture on contested medical procedures

bbag-icon-decStigma, Conscience, and Contested Medical Procedures

Conscientious objection (CO) in healthcare provision is widely represented in discourse and in law as synonymous with opposition to contraception, sterilization or  abortion. The pairing of “conscience” with opposition to family planning services is an understandable product of its history, since the first federal conscience protections for health care workers came in the immediate wake of Roe v. Wade in 1973. Over the past forty years, the idea that “conscience-based” care means not providing contested services has become entirely naturalized, reinforced by both anti-abortion and pro-choice forces. In her talk, Dr. Harris will suggest that this understanding of conscience and family planning care – that they are in opposition – represents a false dichotomization. This depiction neglects entirely that provision of contraception and abortion care is also conscience-based, evidenced by the narratives of health care providers and by the considerable risks of stigma, criminalization and harassment to which doctors and nurses have routinely subjected themselves to provide these services over the past century. This neglect of the alignment of conscience and family planning care has important consequences for law, clinical practice and bioethical theory, which Dr. Harris will discuss.

apr-bbag-11Join us for Dr. Harris’ lecture on Thursday, April 11, 2013 from 12 till 1 pm EST ONLINE ONLY:

We will not be hosting this lecture for an in-person audience, so please join us online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Lisa Harris, MD, PhD; is an Assistant Professor of Obstetrics and Gynecology and Women’s Studies at University of Michigan. Dr. Harris earned her AB in English Literature at Harvard College, and her MD from Harvard Medical School, and her PhD in American Culture at the University of Michigan. She has been a faculty member at the University of Michigan since 1998, where she teaches students across campus, in the Medical School, School of Public Health, and College of Literature, Sciences and the Arts. In her research she examines issues at the intersection of clinical obstetrical and gynecological care and law, policy, politics, ethics, history and sociology. She is currently finishing a book on the history of in vitro fertilization in which she situates the rise in technological reproduction in the larger social and political contexts of changing women’s roles in society, the legalization of abortion, the rise of the religious right, and ongoing erosion of reproductive health resources for poor women of color. She also studies the experiences of abortion workers, abortion stigma, and the clinical and ethical consequences of restrictive abortion legislation.

Event flyer: APR BB_Webinar ad 12_13