||Ambroise Wonkam1, Jantina de Vries2, Charmaine Royal3, Dora MBanya 4, Jeanne Ngongang 5, Fru Angrafo III6
||1Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa, 2Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa, 3 Institute for Genome Sciences & Policy, Duke University, Durham, United States, 4Department of Medicine, Faculty University of Yaoundé I, Faculty of Medicine and Biomedical Sciences, University of Yaoundé I, Cameroon, 5 Biochemestry, Faculty of Medicine and Biomedical Sciences, University of Yaoundé I, Yaoundé, Cameroon, 6 Surgery, Faculty of Medicine and Biomedical Sciences, University of Yaoundé I, Yaoundé, Cameroon.
|Country - ies of focus
|Relevant to the conference tracks
||Women and Children
||We studied the views of 110 doctors, 130 parents with one living child with SCD (Sickle Cell Disease), and 89 adults patients suffering from SCD, regarding prenatal genetic diagnosis and termination of a SCD-affected pregnancy.
The majority accepted the principle of prenatal genetic diagnosis for SCD (78.7%, 89.8% and 89.2%). The majority of parents accepted the principle of termination of SCD-affected pregnancy (62.5%) as opposed to doctors and patients where this group were in the minority (36.1%, and 40.9 %). Parents and patients who rejected termination of pregnancies claimed ethical reasons (69.1 and 78.1%) while those who accepted it feared having another SCD-affected child (98.1 and 88.9%) with a poor quality of life (92.6% and 81.5%).
||Patients with Sickle Cell Disease (SCD) can suffer from anemia, painful episodes, susceptibility to infection, stroke, and chronic organ damage (kidneys, lungs, heart, brain). There is currently no cure available for SCD, but the condition can be managed using a variety of therapies. When the condition is not managed patients tend to die in early childhood as occurs in many African countries.
In Cameroon it is possible to test for sickle cell homozygosity before birth, and in fact Prenatal Genetic Diagnosis (PND) represents one type of preventive strategy, as it is offered as a reproductive option to at-risk parents. PND provides parents with a reproductive option to test at-risk pregnancies and make decisions regarding medical abortion.
However, legal bans on abortion exist in virtually all African countries and when allowed medical abortion is often restricted to direct threats to maternal health. This raises important ethical questions regarding the desirability of terminating affected pregnancies.
Many parents currently caring for a child with SCD opt to abort a fetus that is also suffering from SCD. What has not yet been investigated is the comparative views of parents to those of health care providers and patients living with SCD.
||We examined the attitudes of a sample of Cameroonian medical doctors, parents with at least one SCD-affected child, adult SCD patients towards PND and TAP. There were two major research questions: (1) their agreement with prenatal genetic diagnosis and pregnancy termination in general (2) their agreement with prenatal genetic diagnosis for SCD, and pregnancy termination for SCD, and the reasons for their attitudes.
This research was a quantitative social science study administered by structured questionnaires.
Sample Population and Eligibility Criteria.
The sampling methods used included both purposeful and convenience sampling.
Medical doctors were recruited from a National Medical Conference for continue medical education. In an attempt to ensure inclusion of parents and adult SCD-affected patients and incorporate the entire spectrum of this illness, we issued a call for participation using the national Cameroonian media. We also approached two SCD Patients’ Associations in Cameroon. Participants needed to be at least 18 years old with a diagnosis of SCD that was confirmed by a laboratory documentation of their hemoglobin electrophoresis.
The data were collected by means of a structured questionnaire consisting of three sections of closed-ended questions. These were (1) Socio-demographic characteristics; (2) Attitudes towards SCD screening policies; and (3) Attitudes about principles of SCD- prenatal diagnosis and termination of an affected pregnancy if the participant’s unborn child were proven to be affected. Response options were “Yes,” “No” or “Undecided”.
Research Setting and Data Collection.
The study was conducted at the Yaoundé Central Hospital where face-to-face questionnaires interviews were conducted. Informed consent was also obtained at this stage. In addition to the introductory explanation, each patient was given full non-directive genetic counseling with neutral information concerning PND and its reproductive options. Images were used to explain the obstetric procedure of PND and risks (specifically 1% induced miscarriages). Information on the available therapeutic options and follow up for patients with SCD was reviewed and the participants were given an opportunity to ask questions. The information provided during this counseling session was equivalent to the information that prospective parents would have received had they been seeking PND for SCD.
Data were analyzed using SPSS (Statistical Package for Social Sciences, Chicago). A comparison between two or more variables was evaluated by non-parametric tests (H test of Kruskal-Wallis or Z test of Kolmogorov-Smirnov, when applicable). The p values were considered significant if they reached 95%.
||The majority of parents participants lived in urban areas (89%), were female (80%), Christian (93%), married (60.2%) in monogamous households (81.1%), were employed (61.7%), and had at least a secondary or tertiary education (82%). Similarly, the majority of the patient participants were urban dwellers (84.3%), female (57.3%), Christian (95.5%), single (90.9%), with a secondary/tertiary education (79.5%).
The clinical profile of participant children and patient participants indicated that they suffered from (relatively) severe forms of SCD. The majority of research participants received poor treatment for their SCD. Only 4.4% of participants received hydroxyurea treatment, the only treatment currently available to manage SCD. Nearly 90% (89.7%) had received traditional medicine for their conditions on at least one occasion in the past.
The majority accepted the principle of prenatal genetic diagnosis for SCD (doctors: 78.7%; parents: 89.8% and patients: 89.2%). The majority of parents accepted the principle of termination of SCD-affected pregnancy (62.5%), but doctors and adults patients were less comfortable with this principle (36.1%, and 40.9 % acceptance, respectively). The acceptance of the principle of medical termination for SCD increased with unemployment status. (missing data here)
||Differential views regarding medical abortion for SCD in Cameroon could lead to societal, ethical and legal conflicts. Our finding may well reflect the failure of professional stakeholders to provide adequate care services to patients with SCD in Cameroon.
The patient participants in this study indicated a surprisingly high (40.9%) rate of acceptability of TAP. This is surprising as one could argue that a decision to terminate a pregnancy where the future child would suffer from the same condition that is affecting the parent seems to imply a value judgment about the individuals’ quality of life. Patients who participated in this study presented with severe forms of SCD. We wonder whether our results mean that approximately 4 out of 10 of the patients included in this study did not find their quality of life worth living and did not want to allow a child to experience it. This is a disturbing finding that requires the further attention of policy makers and medical professionals in Cameroon.
Our finding may well reflect the failure of professional stakeholders to provide adequate care services to patients with SCD in Cameroon. For instance, the average late diagnosis of the condition in our participants leads to greater clinical severity. In addition, the very low number of people who receive adequate medical care to manage their condition, as well as the large number of people who received traditional medicine, may also indicate the failure of medical professionals in Cameroon to adequately manage SCD. Many patients with SCD require the expertise of specialized centers. Lifelong medical care and surveillance are not yet available in Cameroon where provision of healthcare services is hampered by major economic, organizational and infrastructural difficulties.These differential views of patients, physicians and parents also indicate potential ethical conflicts between various components of the Cameroonian society regarding TAP for SCD. Additional studies among various groups may provide detailed insight into the range of moral, legal and social perspectives held by the public and the healthcare community regarding genetic technology and prenatal diagnosis in Cameroon.