On 28th May 2021 the Inquiry heard the Presentation by Counsel to the Inquiry about Ethical and Professional Guidance for Clinicians.
The purpose of the Presentation was to share information about the guidance on ethical and professional responsibilities that was available to clinicians and other healthcare practitioners at relevant times with the people who were infected, affected, core participants and the wider public, The focus of the Presentation was for the period up to 2000.
Inquiry Counsel began the Presentation with a historical look back on the guidance provided by the General Medical Council (GMC) and the British Medical Association (BMA) from the 1970s through to the early 1990s, covering four themes: Consent, Confidentiality, Research, and Ethical Issues and Crises in the 1980s and 1990s. Changes in the guidance for doctors over the decades from these two principal organisations were highlighted and it was noted that it was not until 1985 that the GMC guidance for doctors became more positive for good practice and patients came to the forefront.
Inquiry Counsel referred to the Hippocratic Oath and the Declaration of Geneva and concepts of ethical principles they contain.
Inquiry Counsel discussed at length the ethics of paternalism and autonomy referencing many documents concerning this. It was noted that although in the 1980s doctors seemed to be moving away from paternalism and more towards a partnership with patients, the guidance had changed but not necessarily the principles.
Inquiry Counsel spoke about guidance on consent to treat and informed consent. Many guidance documents were referenced, and comparisons made. Inquiry Counsel also explored the concept of assault by doctors when performing unauthorised operations. Inquiry Counsel explained the mechanisms of obtaining consent in varying situations and scenarios including consent for children.
Inquiry Counsel spoke of a patient’s right to self determination and the freedom to make informed decisions on treatment and their participation in research. It was noted that there was a deficiency in the BMA guidance as there was no reference to an individual’s right of choice to treatment. Inquiry Counsel spoke about an individual’s rights to be informed on the risks and benefits of appropriate treatment options and how doctors were reluctant to inform patients about the risks in case they refused treatment and would, instead, inform other family members.
Inquiry Counsel referred to guidance by the World Medical Association (WMA) and gave examples of the guidance on patient confidentiality and secrecy. She spoke of the duty of doctors to respect the confidentiality of patients’ data, and explored the guidance on the sharing of patient data with other clinicians, nurses and/or non-medical colleagues and the ethics surrounding this subject.
Medical research and the basic principles of the Nuremberg Code (1947) were discussed regarding patient consent. The Code states that voluntary consent is essential before any experiment and the patient must be provided with information concerning the procedure and the results must justify the performance of the experiment. Inquiry Counsel also referred to the basic principles of the Declaration of Helsinki in this regard.
Inquiry Counsel discussed and referenced documents concerning the distinctions drawn between two types of research; therapeutic and non-therapeutic. The distinction was unclear.
Inquiry Counsel then moved on to ethical issues in the AIDS crisis in the 1980s and spoke of the risk to nurses handling blood and blood products and the risk of infection. Inquiry Counsel referred to guidance by the Nursing Council concerning the taking of blood from individuals who had not given their consent and the possibility of civil action being taken against them.
Inquiry Counsel also discussed the guidance on patient confidentiality and the appropriateness of sharing patient data.
For a full transcript of the evidence of the presentation visit https://www.infectedbloodinquiry.org.uk/evidence where you can read the transcript or watch the evidence via YouTube video.