Ethical Issues and Treatment Policies

[This document is part of the « Malaria Indicator Survey » toolkit, developed by the RBM-MERG, with contributions from the following partners: Center for Disease Control-CDC, Swiss Tropical Institute, Johns Hopkins University, The World Bank, The Global Fund against AIDS, Tuberculosis and Malaria, Liverpool School of Tropical Medicine, MACRO International, Malaria Consortium, Malaria Control and Evaluation Partnership in Africa (MACEPA) – PATH, Malaria in Pregnancy Consortium Secretariat, MEASURE Evaluation, WHO,WHO-AFRO, RBM-PS, Tulane University, UNICEF and USAID/PMI. This toolkit also largely benefited from national programmes from countries having conducted MISs.]

Ethical Issues Overview

• Principles• Consent

– Who cannot give consent?– Children– Waiver of consent

• Informed consent– Information– Comprehension

• Benefits• Risks• Confidentiality• Providing useful information on malaria

Ethical Principles

• Respect for Persons– Autonomy to make decisions– Protection of vulnerable persons

• Beneficience– Do not harm– Maximise benefit and limit harms

• Justice– Fair selection of subjects

Principle of Respect for Persons: Consent

• Who cannot give consent?– Unconscious– Mentally incapable of understanding– Children under age 16

• Children: – Age 6 to 15 can give assent. If child refuses

assent, parent cannot force participation– Under 6 years: parent gives consent for child

Principles of Respect for Persons and Justice

Informed consent

• Participant must know:– The purpose of the study– How they were selected to participate– How many other people are involved– What is expected of them (procedures, time)– Who to contact if they have questions

• Written or verbal consent?

Principle of Beneficience:

Benefits• If a person is positive for malaria or anaemia,

they get immediate treatment• Survey will give information on:

– Malaria and anaemia distribution – Malaria intensity– Coverage of control measures

e.g. spraying and net use– Use of health services for malaria treatment

• The aim is to improve the malaria control program, clinical services and health knowledge

• In general, benefits to individuals are quite low in this study

Principle of Beneficience

Risks (possible harms)

• Discomfort and infection from the fingerprick

• Emotional upset from talking about illness and death of children

• Side effects of treatment drugs

• In general, risks are also low in this study

Principles of Respect for Persons and Beneficience:

Confidentiality

• Try to conduct interview in private

• Never discuss someone’s answers with another person

• Potential for harm if information released

• Data will be stored without names

Principle of Beneficience:

Providing useful information on malaria prevention

• People may ask during survey about – what causes malaria, malaria symptoms, getting

treatment, how to prevent malaria, how to use net etc.• You must answer the questions• However, if asked during interview, say:

– “Those are good questions. I will answer them to the best of my ability at the end of the interview.”

• Then remember to spend a few minutes responding

• Answer briefly and refer to further sources such as community health workers