The approach of the Declaration of Taipei is to protect individuals from AI abuse and harms of the health and bioinformatics data leaks. Artificial intelligence that is applied to medicine, predictive models based on genetic biobanks, and digital health platforms are powerful tools. The human race will automatically depend on bioethics to armour themselves with protection against the vulnerabilities on the new age of technology dependency. This also protects the social functions without which the national healthcare systems of every country cannot function. This needs to effectively and meaningfully progress with equity, and resopnsibility with the progression of technology.

One of our biggest challenges in this era; equity in health databases and biobanks.

The question arises;
Who is represented in these systems?
Whose voices are amplified and whose voices are silenced?
And most importantly, how do we ensure the benefits of research are shared not just widely but equitably?

This meeting in Vatican City is the third following important consultations in Taipei, Taiwan and São Paulo, Brazil. 

African populations represent 1/5th of the world’s population yet they only account for a small porportion of participants in genomic studies and biobank collections. Trust is not assumed, it is earned. An ethical stewardship of health data is not just simply about protecting viable health information. It is about respecting the dignity, autonomy and rights of every person whose data contributes to the advancement of science and medicine. Justice and equity are the two fundamentals here. One, is what’s morally obligated and the second, the other, is the differences. Another key question is that, who’s in the database and who’s missing? Literature studies show that most datasets represent people from high-income countries/within countries from urban populations/from majority ethnic groups/ people already connected to the healthcare systems. The under represented groups are racialised minorities, indigenious communities, migrants, people with disabilities, rural populations, women in many research areas, LGBTQ communities, and people from low-resource settings.

So, an under represented group ends up not recieving precision medicine which will be available for the wealthier/priviledged societies. Unfortunately, there are countless examples of where this has already been involved in practice. One example, is the warfarin treatment of Black populations that have different pharmacogenomics. This systematically led to worst clinical outcomes for Black peoples. Other examples include machine-based learning or even AI based systems in medicine. Another one, is when chest x-rays were under-diagnostic for women because they were collected less of.

So, in addition to this one key question, here is the need of whose needs are prioritised and why.
Which diseases receive research attention and why?
Which populations are considered scientifically interesting and why?

“However, biobanks that are collected in the underserved regions of the world are a gross violation of research reciprocacy.”

Individuals could be asked research material be provided autonomously and this creates an exploitive structure. This could only be addressed at the governance level. Procedural justice – who exactly decides and demands the access and use of databases and biobanks?

Indigenous health data sovereignity and community health interests often get harmed. Data colonialism – Wherein, extracting health data from resource poor communities and its being benefitted elsewhere. So, in the speaker’s defense, there should be that the different elements of justice must be the focus of the declaration, individual’s rights, autonomy, privacy and protection should not be compromised, equitable agenda setting, fair governance and benefit sharing. Transparency and accounability are also important for not just commercial partnerships but also for secondary research.


Article 17 sets the duty to protect the interests and rights of the communities concerned in particular when vulnerable especially in terms of benefit sharing. Discrimination, lack of respect for equality is indeed a powerful generator of inequality. Article 10 of the 2005 of the Universal Declaration on Bioethics and Human Rights, Equalitry, Justice and Equity succinctly summarises the idea of justice generated by the essential connection between equality and equity. In the legal sphere, equity refers to justice as impartiality, but also more specifically to the ability and responsibility to apply the law not rigidly, but always taking into account the specific circumstances of that particular case. It thereby prevents the strictest application of the law from becoming the greatest injustice. In the sphere of taxation, the concept of equity is used to justify the distribution of tax burden which is the primary tool of income redistribution policies. Horizontal equity requires that individuals with the same ability to pay be taxed equally. Vertical equity is the basis of higher taxation of those with a greater ability to pay, including through progressive marginal tax rates. Finally, equity in healthcare implies the idea that the benefits of scientific progress cannot be enjoyed only by few at the risk of an unsustainable erosion of the principle of equality.

Specific vulnerabilities make certain individuals and groups sensitive. So reads article 8 should contribute to the benefit of society in particular public health objectives. These observations help us understand why starting from the early 2000s the issue of representation and the issue of benefit sharing converged towards the the compound term data inequity.

Fairness is a key synonym of equity and vice-versa. Maybe the new declaration should include article 5 and article 8.
*****
Health equity – defined as absence of systemic, unfair and avoidable differences in health between social groups.

The Tuskegee Syphilis Study
From 1932-1972, the US Public Health Service conducted a study on 399 untreated syphilis in Black men in Alabama. Despite formal institutional procedures being followed, participants were delibrately being denied treatment even after penicilin became standard care.

Would’ve those mens’ informed consent reduced the inequities?

Henreitta Lacks
In 1951, cels were taken from Henreitta Lacks without her knowledge or consent. Her “HeLa” cells became one of medicine’s most important tools, yet her family received no benefits for decades.

Procedural gaps enable exploitation even when research yields enormous scientific value.

*****

For equity we also turn to role of IRBs.

“Historically an IRBs primary focus was safeguarding the rights and welfare of individual research subjects, concentrating on plans of informed consent and the assessment of risks and anticipated benefits…”

IRBs also assumed responsibility for ensuring that disadvantaged persons have equitable acess to such benefits.

Guideline 3

Equitable distribution of benefits and burdens in the selection of individuals and groups of participants in research

Two-part evaluation

Part 1 : Scientific Assessment

Acceptable/ Not acceptable/ Subject to conditions

Part 2 : National assessment

1. Informed consent

2. Reward or compensation to subjects

3. Recruitment of subjects


All Keynote Speakers;
Renzo Pegoraro
Jacqueline Kitulu
Dr Clobert Pablo
Pablo Requena
Otmar Kloiber
Stefano Semplici
Dominique Sprumont
Carlo Maria Petrini

Part 1 Declaration of Taipei
https://youtu.be/vF2acTzBbqE?si=MgjQRzn62F1z5IG



Sources & Credit:

https://youtu.be/vF2acTzBbqE?si=MgjQRzn62F1z5IG

https://app.mlsend.com/g6y8o0m4y4/

https://app.mlsend.com/g6y8o0m4y4/