While voluntary blood donation camps are improving in terms of their adherence to national and global standards are concerned, a major area which continues to remain neglected is that of donor counselling. Most blood banks do not have a trained counsellor to attend the drives and even those who take up the responsibility lack the necessary focus and skill. We share in this article the ethical and legal considerations in blood donor counseling as indicated in the Implementation Guidelines for Blood donor Counselling by World Health Organisation.
RIGHTS AND RESPONSIBILITIES OF THE BLOOD TRANSFUSION SERVICE (BTS) AND BLOOD DONORS
The primary responsibility of the BTS is to ensure a safe blood supply and to protect the health of blood donors and blood recipients. The right and obligation to defer unsuitable donors is based on a risk assessment of epidemiological data. It is also the responsibility of the BTS to provide appropriate counselling services to individuals who have been deferred. The BTS should provide a safe and pleasant environment for blood donors, treat them with respect and obtain their informed consent before blood donation.
Donors should be given all relevant information and, in particular, provided with transfusion transmitted infection (TTI) test results. The BTS should ensure and assure donors of the confidentiality of all personal information they provide, notably those related to health and exposure to TTI risks. The BTS has an obligation to blood donors to ensure the notification of positive test results and the availability of appropriate counselling and referral.
Individuals have rights and responsibilities as blood donors. These include:
CONFIDENTIALITY AND PRIVACY
Many countries have laws and regulations on confidentiality and privacy. The issue of confidentiality may be handled under the broad label of “privacy rules” or “privacy laws”.
Confidentiality
Confidentiality refers to the obligation of health-care professionals and healthcare institutions not to disclose personal and sensitive information about their patients or blood donors to third parties. This duty has long been codified in the Hippocratic Oath and is still one of the core principles of medical ethics. Strict confidentiality of personal information about donors and their test results should be ensured at all times. A breach of confidentiality may negatively affect the relationship between the BTS and the community it serves. Confidentiality of donor records should be ensured through the use of unique numbers for donors and donations and the use of codes for infection markers.
Medical data should be shared only with other health-care providers who are, or will be, directly involved in the subsequent care of the donor. Otherwise, no confidential information should be shared without the consent of the donor. In particular, anonymity between blood donors and the recipients of their blood should be ensured. Because of the stigma and discrimination that may be associated with abnormal TTI test results, confidentiality of these results is crucial.
Privacy
Privacy refers to a person’s right to not be asked about matters of a personal nature. Under the ethical principle of respect for a person’s autonomy, health workers have an obligation to respect privacy. Therefore, blood donor counselling should be provided in a setting designed to ensure reasonable audio and visual privacy.
In addition to being an ethical obligation, maintaining confidentiality and privacy contributes to a safe blood supply by reinforcing donors' confidence that personal information revealed to BTS staff will be protected and not shared with any unauthorized person. Potential donors may be more willing to share all relevant, sensitive information if they trust that it will be handled in a confidential manner. The training of BTS staff and volunteers should include how to ensure privacy of blood donors and confidentiality of donors’ personal information and test results.
INFORMED CONSENT
Informed consent is a voluntary agreement given by the prospective donor to the donation process, including the donation of blood, the testing of blood for TTI and blood group serology and, if applicable, the use of blood for additional tests, quality assurance or research purposes. Informed consent is a process based on the ethical principles of autonomy and respect for the individual.
Informed consent is obtained during pre-donation counselling when the donor has an opportunity to ask questions. The BTS should provide the following minimum information to the potential donor:
Donors should be explicitly informed before blood donation that they will be informed of any abnormal TTI test results. If they are unwilling to receive the TTI test results, they should be counselled and deferred because the BTS has a duty of care to blood donors. When donors do not wish to know their TTI test results, the BTS cannot fulfil its duty to provide care through counselling, referral for treatment and support, and in the prevention of further transmission.
VOLUNTARY PARTNER NOTIFICATION AND COUNSELLING FOR HIV AND OTHER TTI
In the case of a positive test results for HIV or other TTI, the blood donor has an ethical obligation to inform his/her sexual partner(s), and the BTS should encourage and support the individual in doing so. In particular, a HIV-positive person should be referred to a specialized counselling site that will be able to assist them in partner counselling. The issue of partner notification and counselling should also be addressed in the national blood policy and legislative framework.
STIGMA AND DISCRIMINATION
The social act of voluntary non-remunerated blood donation often provides donors with high self-esteem. If a donor is deferred, disappointment is therefore a natural emotive reaction. When faced with deferral, or what may be perceived as rejection, the individual’s self-esteem may be affected adversely. For an individual who has tested positive for a TTI, stigma, silence, denial and discrimination may undermine prevention, treatment and care efforts and may have a negative effect on the individual, family and community. The BTS should maintain a climate in which there is no stigmatization of deferred donors or discrimination against them.
As part of community education and pre-donation information, the BTS should inform the general public that donor deferral can occur for many different reasons. Counselling sessions should be set up to avoid potential stigmatization. For example, in recruiting donors from schools or other community settings, care should be taken to ensure that deferred donors are not identified or stigmatized, regardless of the reason for deferral. In counselling deferred donors, BTS staff should carefully explain the reasons for the deferral and attempt to positively reinforce the deferred donor’s self-esteem.
SPECIAL CONSIDERATIONS FOR ADOLESCENT BLOOD DONORS
Special consideration should be given to adolescent donors in terms of informed consent, disclosure to parents or guardians, and donor notification. National laws vary as to the legal age for consent to blood donation. If the donor selection criteria in a country permit blood donation by minors, the national blood policy and legislative framework should address the matter of confidential notification and counselling of these donors. During the process of pre-donation counselling and obtaining informed consent, adolescent blood donors should be informed if it is standard practice to report test results to parents or guardians. WHO and UNAIDS encourage countries to provide adolescents with independent access to HIV prevention, treatment, care and support. The BTS should make efforts to ensure that TTI-positive adolescent donors receive adequate counselling and referral services.
The original guidelines can be downloaded from http://www.who.int/bloodsafety/voluntary_donation/Blooddonorcounselling… -or- http://goo.gl/lZY2AS
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- Right to clear and appropriate information, including the purpose of donor selection, and Many countries have laws and regulations on confidentiality and privacy. The issue of the consequences of failure to provide the relevant information to the BTS
- Responsibility to provide the BTS with all relevant information to the best of their knowledge about health conditions that may pose risks for their health and about activities or behaviours that increase their risk for a TTI
- Responsibility to self-defer from blood donation if they believe they are unsuitable to donate; no donor should use blood donation as a means to obtain medical check-ups, to know their HIV status or to be tested for other TTI
- Right to withdraw from blood donation at any time during the procedure for any reason, including doubts as to their suitability as a blood donor, without any need to explain this decision
- Responsibility to inform the BTS after donating blood if they have any doubts about their suitability or in the event of a change in health status within 28 days after blood donation.
- The blood donation process and potential adverse donor reactions
- The tests that will be performed(TTI,blood group serology and others) on the samples taken from the donated blood and the reasons for these tests
- Confidentiality of all personal information, including test results
- The mode of communication with the donor about unusual or abnormal test results
- If applicable, a sample of the blood or the donated blood unit may be used for additional tests, quality assurance or research purposes, in accordance with the national policies.