Ethical Aspects in TB
Dr. Mohamed Sallam
TB AND ETHICS
• TB, the world’s top infectious killer disease,
claims 5000 lives each day and affects the
poorest people, most measureable cause being
stigma and discrimination.
• The heaviest burden is carried by communities
which already face socio-economic challenges:
Migrants, refugees, prisoners, ethnic minorities,
miners and others working and living in riskprone settings, and marginalised women,
children and older people.
• Social factors like poverty and illiteracy,
personal factors like malnutrition and
discrimination; environmental factors like
poor housing and sanitation along with HIV,
tobacco, alcohol use and diabetes, can make
people vulnerable to TB and hinder their
accessibility to health care.
• WHO emphasises five key ethical obligations for
governments, health workers, care providers,
nongovernmental organisations, researchers and other
stakeholders to:
 Provide patients with the social support that is needed to fulfil
their responsibilities.
 Refrain from isolating TB patients before exhausting all options
to enable treatment adherence and only under very specific
conditions.
 Enable ‘key populations’ to access the standard of care that is
offered to other citizens.
 Ensure that all health workers operate in a safe environment.
 Rapidly share evidence from research to inform national and
global TB policy updates.
• Protecting human rights, ethics and equity as
principles which underpin WHO’s End TB
Strategy, but it is not easy to apply these
principles on the ground. Patients,
communities, health workers, policy makers
and other stakeholders frequently face
conflicts and ethical dilemmas
Who Guidance on Ethics to End TB
• WHO has released new guidance on TB ethics
entitled “ethics guidance for the implementation
of the end TB strategy” to help ensure that the
implementation of the end TB strategy is in line
with sound ethical standards .
• The goal of this guidance document is to assist
those working towards ending TB by proposing
practical answers to key ethical questions and
enabling patients, families, civil society, health
workers and policy makers to move forward and
address current challenges.
Why are Ethics Important?
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For a patient-centred approach to TB care.
Trust and cooperation of patients and care providers is essential for
a successful TB programme.
Addressing the social determinants (e.g. poverty) which underlie
the TB epidemic.
Providing health care workers with adequate protections is a key
factor in having a healthy and committed work force.
Ensuring adequate treatment for migrants is grounded in the ethical
duty to care for the most vulnerable, ‘leaving no one behind’, and
also in the interest of the populations of host countries.
Adequate care and treatment for prisoners is an ethical obligation
as they reintegrate back into the community.
Access to diagnosis and treatment for children needs to be
expanded to reach all in need.
Major Ethical Considerations When
Ending the TB Epidemic
• Governments have an ethical responsibility
to implement services based on the end TB
strategy
– To ensure free and universal access to diagnosis,
treatment and care of TB.
– To ensure that health care workers operate in a
safe environment; patients are enabled with
proper support to fulfil their responsibilities.
– To provide access to MDR-TB care, even if many
countries still have to scale-up treatment.
People need to be fully informed and
counselled about their TB situation
• As per patient’s autonomy, people undergoing
TB testing and treatment should receive
complete and accurate information about the
risks, benefits and alternatives available to
them; and access to all means which enable
informed adherence to treatment.
Health care providers have an obligation to support
patients to complete therapy and offer all possible
treatment options
• Any tool to ensure adherence to treatment, including
directly-observed therapy, should be based on a
patient-centred approach, so that values and needs of
patient guide the care delivered, respecting autonomy
and privacy.
• Health care workers have obligations to provide care,
but also a right to adequate protection.
• Governments and health care institutions must provide
the necessary goods and services to allow for a safe
working environment. Also, health care workers who
are at risk (who are HIV positive), may be exempted
from their duty to care.
Involuntary isolation should never be a
routine component of TB programmes
• TB treatment should be provided on a voluntary basis,
engaging the patient in the treatment process and
respecting his/her autonomy. Lack of treatment,
support and proper counselling likely to affect patient’s
decision for treatment.
• In very rare cases, where all efforts to engage a patient
to adhere treatment fail, the rights of other members
of the community might justify efforts to isolate the
contagious patient involuntarily. However, isolation
should always be used as a very last resort and it
should not include forced treatment if the patient
refuses it.
Legal-Ethical Issues with TB
1. Countering discrimination
 Discrimination and stigma, which are the
socialdeterminants of health, though used
interchangeably, is different in the sense that
discrimination actually excludes and brings about
inequality.
In India, TB patients face stigma and discrimination in
own community, society, workplace and outside.
Thus, the National Strategic Plan (NSP) addresses this
issue by clause of non-discrimination and nonstigmatisation of TB patients.
2. Isolation
End TB Strategy, 2017, the WHO makes clear
that in the context of TB, “involuntary
isolation must always be a last resort only
after all else fails, it can’t be justified if other
ways of protecting the public from infection
exist, such as enrolment on effective
treatment and use of masks.”
3. Consent:
Every human being of adult age and sound mind
has the right to take decisions for his body, and a
surgeon who performs an operation without the
patient’s consent commits an assault.
WHO guidance describes the importance of
consent in case of TB.
4. Confidentiality: Privacy and confidentiality
are rights that find articulation in most legal
framework.
5. Limiting criminalisation
The ‘least restrictive’, ‘least intrusive’ and ‘strictly
necessary’ requirements in international
covenants ought to be followed by governments
prior to restricting rights of people with TB and of
those involved directly or indirectly with their care
and treatment.
6. TB in the workplace
WHO recommends a comprehensive set of infection
control measures comprising administrative,
environmental and personal protection measures
in health care facilities and congregate settings.
7. Universal health coverage (UHC)/insurance:
WHO defines UHC as ensuring that all people have
access to needed promotive, preventive, curative and
rehabilitative health services, of sufficient quality to
be effective, while also ensuring that people do not
suffer financial hardship when paying for these
services.
As in TB where out of pocket expenditure exhausts all
the savings of the person affected by it and serious
consequences, which impoverishes families by
afflicting those of employable age, due to loss of jobs
and wages.
8. TB in prisons
Prisoners are vulnerable to TB because the
conditions in prisons are conducive to the
spread of the disease like overcrowding, poor
sanitation, ventilation, nutrition and infection
control measures.
9. People living with HIV
People living with HIV (PLHIV) are at particular risk of
TB, and it remains the leading cause of death among
PLHIV.
WHO recommends routine HIV screening for people
with TB and for screening of TB symptoms among
PLHIV.
 Anti-retroviral therapy (ART) reduces the risk of TB by
approximately two-thirds; for PLHIV on TB treatment,
ART should be commenced within 2–8 weeks of the
commencement of TB treatment.