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.

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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.

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References

  1. Beauchamp TL, Childress JF. (2016). Principles of Biomedical Ethics. New York: Oxford University Press. 39–64.
  2. Centers for Disease Control Media Relations. CDC recommends only two HPV shots for younger adolescents. October 19. 2016. https://www.cdc.gov/media/releases/2016/p1020-hpv-shots.html.
  3. Constitution of Tanzania.
  4. Folayan MO, Haire B, Harrison A, Odetoyingbo M, Fatusi O, Brown B. Ethical Issues in Adolescents’ Sexual and Reproductive Health Research in Nigeria. Developing World Bioethics. 2015 Dec;15(3):191-8. DOI: 10.1111/dewb.12061. Epub 2014 Jun 9. https://www.ncbi.nlm.nih.gov/pubmed/24910162.
  5. Ministry of Health and Social Welfare. National Comprehensive Guidelines for HIV Testing & Counselling. February 2013. https://aidsfree.usaid.gov/sites/default/files/htc_tanzania_2013.pdf.
  6. National Bureau of Statistics, Dar es Salaam, Tanzania. Tanzania Demographic and Health Survey. 2010. Available at: http://dhsprogram.com/pubs/pdf/FR243/FR243%5B24June2011%5D.pdf.
  7. National Institute of Medical Research. Tanzania Standard Operating Procedures. 2014. http://www.nimr.or.tz/wp-content/uploads/2018/11/SOPS-2014-KEY-NatHREAC-SOPs-Final-17th-June-2014.pdf.
  8. Tanzania National Health Research Forum. Guidelines of Ethics for Health Research in Tanzania. Prepared by the National Health Research Ethics Committee. Second edition 2009. http://www.nimr.or.tz/wp-content/uploads/2018/11/Guidelines-of-Ethics-for-Health-Research-in-Tanzania2.pdf.
  9. Zulu JM, Ali J, Hallez K, Kass N, Michelo C, Hyder AA. Ethics challenges and guidance related to research involving adolescent post-abortion care: a scoping review. Reproductive Health. 2018 May 2;15(1):71. DOI: 10.1186/s12978-018-0515-6. https://www.ncbi.nlm.nih.gov/pubmed/29720276.

Acknowledgement: The author thanks Libby Bogdan-Lovis for editing assistance with this article, and also acknowledges her Postgraduate Bioethics students for active participation in discussing contemporary bioethical issues.

About Michigan State Bioethics

Devoted to understanding and teaching the ethical, social and humanistic dimensions of illness and health care since 1977.
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