Navigating the ethical landscape of gene editing, biobanking, and equitable access to scientific advancements
In 2018, a Chinese scientist named He Jiankui announced he had created the world's first gene-edited babies, sending shockwaves through the scientific community and public alike. This unprecedented experiment demonstrated both the extraordinary potential of biotechnology to alter human destiny and the urgent ethical questions it raises. Who decides how these powerful technologies should be used? Who benefits from them? And how do we ensure that scientific progress doesn't exacerbate existing inequalities? 1
These questions lie at the heart of UNESCO's work in biotechnology and bioethics. As science advances at an unprecedented pace—from CRISPR gene editing to synthetic biology—we face increasingly complex dilemmas about the ethical boundaries of manipulating life itself.
UNESCO's role in this landscape is to facilitate global dialogue and develop frameworks that ensure scientific progress benefits all of humanity, not just a privileged few. At the core of this mission is Article 27 of the Universal Declaration of Human Rights, which recognizes everyone's right to "share in scientific advancement and its benefits." This article explores how UNESCO is working to transform this lofty ideal into reality amid the biotechnology revolution.
Gene editing could eradicate hereditary diseases, create climate-resilient crops, and develop novel therapies for currently incurable conditions.
Unequal access, eugenics applications, ecological disruption, and consent issues for future generations pose significant challenges.
Since the 1990s, UNESCO has established itself as the United Nations' lead agency on bioethics, creating global standards for ethical scientific development through three advisory bodies: the International Bioethics Committee (IBC), the Intergovernmental Bioethics Committee (IGBC), and the World Commission on the Ethics of Scientific Knowledge and Technology (COMEST). These bodies bring together leading global voices in bioethics, technology, and science governance to address emerging ethical challenges 3 .
International Bioethics Committee - independent experts providing advice on bioethical issues
Intergovernmental Bioethics Committee - government representatives addressing bioethical concerns
World Commission on the Ethics of Scientific Knowledge and Technology - addresses broader ethical issues
The cornerstone of UNESCO's bioethical framework is the 2005 Universal Declaration on Bioethics and Human Rights, which articulates 15 fundamental principles to guide scientific development. These include respect for human dignity, consent, privacy, and the all-important Article 15 on the "sharing of benefits," which states that "benefits resulting from any scientific research and its applications should be shared with society as a whole and within the international community" 6 . This principle challenges the scientific community to rethink traditional models of knowledge hoarding and commercial exploitation.
"Benefits resulting from any scientific research and its applications should be shared with society as a whole and within the international community." - Article 15, Universal Declaration on Bioethics and Human Rights
UNESCO's ethical approach balances two potentially competing values: the freedom of scientific research and the ethical responsibility to prevent harm. The Recommendation on Science and Scientific Researchers emphasizes that while open communication of results lies "at the very heart of the scientific process," Member States must also develop "adequate policies" to "avoid the possible dangers" of scientific discoveries 7 . This delicate balance has become increasingly difficult to maintain as biotechnology's power grows.
Biobanks—repositories that store human biological specimens and associated data for research—illustrate the complex practical challenges of implementing benefit-sharing principles. Despite the rapid global growth of biobanking (with close to 70% of the world's biobanks located in Europe), considerations specific to benefit-sharing have received little attention until recently 1 .
| Challenge | Description | Ethical Concern |
|---|---|---|
| Future Use Uncertainty | Samples collected for one purpose may be used for unforeseen future research | Difficulty obtaining meaningful consent for unspecified future uses |
| Benefit Uncertainty | Potential benefits from research may be unknown at time of sample collection | How to plan for benefit-sharing when benefits are unpredictable |
| Stakeholder Uncertainty | Multiple parties may be involved across different jurisdictions | Who is responsible for providing benefits - researchers, sponsors, governments? |
| Timing Uncertainty | Benefits may emerge years after sample collection | When should benefits be provided - during or after research? |
A 2021 scoping review published in the BMC Medical Ethics Journal revealed that major benefit-sharing challenges in biobanking stem from uncertainties associated with several aspects of research 1 .
The review found that most current benefit-sharing approaches fail to recognize the distinct features of biobanking, particularly relating to uncertainties around sample sharing and re-use 1 . This has led to calls for more flexible models where decisions about benefit-sharing are made progressively once it becomes apparent who samples are being shared with and for what purpose.
Approximately 70% of the world's biobanks are located in Europe, highlighting geographical disparities in research infrastructure 1 .
These challenges are not merely theoretical—they have real-world implications for whether biobanking research reduces or reinforces global health inequities. When samples from vulnerable populations in developing countries contribute to profitable medical breakthroughs, the absence of clear benefit-sharing mechanisms can perpetuate what some critics describe as scientific neocolonialism.
In 2012, a landmark experiment published by Emmanuelle Charpentier, Jennifer Doudna, and their teams demonstrated that the CRISPR-Cas9 system could be programmed to cut specific DNA sequences in test tubes, paving the way for its use as a precise gene-editing tool 2 5 . This breakthrough, which would eventually earn them the Nobel Prize in Chemistry in 2020, transformed biotechnology by providing scientists with an unprecedented ability to rewrite the code of life.
The researchers harnessed a natural defense mechanism found in bacteria and archaea. In nature, when viruses invade these organisms, they incorporate fragments of viral DNA into their own genomes at sites called clustered regularly interspaced short palindromic repeats (CRISPR). These sequences serve as molecular "mug shots" that help the organism recognize and destroy returning viruses 5 .
| Component | Type/Form | Function in the Experiment |
|---|---|---|
| Cas9 Protein | S. pyogenes-derived | Creates double-strand breaks in DNA at precise locations |
| Guide RNA | Synthetic RNA molecule | Directs Cas9 to specific DNA sequences through complementary base pairing |
| Target DNA | Plasmid DNA containing target sequence | Served as substrate to demonstrate proof-of-concept |
| Cellular Repair Machinery | NHEJ and HDR pathways | Enabled introduction of specific genetic modifications after cutting |
The researchers combined two key components: the Cas9 protein (which acts as molecular "scissors" that cut DNA) and a custom-designed guide RNA molecule that specifies the exact DNA sequence to be targeted.
They introduced this complex to DNA containing the target sequence. The guide RNA latched onto the complementary DNA sequence, positioning Cas9 to make a precise cut at that specific location.
After the DNA was cut, the scientists leveraged the cell's natural DNA repair mechanisms—either non-homologous end joining (NHEJ) or homology-directed repair (HDR)—to introduce specific genetic changes.
The experiment successfully demonstrated that CRISPR-Cas9 could be programmed to cut DNA at precise, predetermined locations. The system proved remarkably accurate, efficient, and easy to use compared to previous gene-editing technologies like zinc-finger nucleases (ZFNs) and transcription activator-like effector nucleases (TALENs) 2 .
| Application Area | Potential Benefits | Ethical Concerns |
|---|---|---|
| Human Somatic Cell Therapy | Treating genetic disorders like sickle cell anemia, cystic fibrosis | Safety concerns about off-target effects; high costs limiting access |
| Human Germline Editing | Preventing heritable genetic diseases | Permanent changes to human gene pool; consent of future generations; potential for enhancement |
| Agriculture | Developing disease-resistant, nutritious crops | Environmental impact; corporate control of food supply; labeling controversies |
| Environmental Use | Combating invasive species; conserving threatened species | Unpredictable ecological consequences; gene drives potentially disrupting ecosystems |
The implications were staggering—researchers now had a tool that could potentially correct disease-causing mutations, create better animal models for human diseases, develop innovative cancer treatments, and engineer crops with improved nutritional value and disease resistance 2 . However, the same technology also raised the specter of eugenics, ecological disruption from gene drives, and the creation of biological weapons.
The experiment's most significant outcome was perhaps the realization that science had crossed a threshold—humanity now possessed the ability to consciously direct its own evolution, a power that philosopher Hans Jonas had warned requires a new ethics of responsibility toward the future 4 .
Modern biotechnology research relies on a sophisticated array of reagents and tools. The following table details key components used in experiments like the CRISPR-Cas9 study and their functions:
| Reagent/Tool | Function | Example in CRISPR Experiment |
|---|---|---|
| Restriction Enzymes | Cut DNA at specific sequences | Early alternative to CRISPR; less precise and flexible |
| Plasmid Vectors | Carry foreign genetic material into cells | Used to deliver Cas9 and guide RNA components into target cells |
| Polymerase Chain Reaction (PCR) | Amplify specific DNA sequences | Used to verify successful gene edits by detecting modified sequences |
| Adeno-Associated Viruses (AAVs) | Viral vectors for in vivo gene delivery | Used in some CRISPR applications to deliver editing components to specific tissues 2 |
| Guide RNA Molecules | Target-specific RNA sequences | Direct Cas9 to precise genomic locations through complementary base pairing |
| Cas Proteins (Cas9, others) | RNA-guided DNA endonucleases | Create controlled double-strand breaks in DNA at specified locations |
| Cell Culture Media | Support growth of cells outside organisms | Maintain host cells for in vitro CRISPR experiments |
| Antibiotic Selection Markers | Identify successfully modified organisms | Help select cells that have incorporated the desired genetic changes |
Restriction enzymes, plasmid vectors, and PCR formed the foundation of genetic engineering for decades before CRISPR revolutionized the field.
CRISPR-Cas systems, guide RNAs, and advanced delivery mechanisms like AAVs have dramatically accelerated genetic research capabilities.
Translating ethical principles like benefit-sharing into practice remains challenging in a world marked by significant economic and social inequalities. The CRISPR-Cas9 story provides a telling example—while the technology was rapidly patented and commercialized, primarily by Western institutions, its benefits have been slow to reach developing countries 5 . A single CRISPR-based therapy for sickle cell disease, Casgevy, costs upwards of $2 million per patient, placing it far beyond reach for most patients in the global South 9 .
Cost of Casgevy, a CRISPR-based therapy for sickle cell disease 9
Of biobanks located in Europe, highlighting global research disparities 1
Principles in UNESCO's Universal Declaration on Bioethics and Human Rights 6
UNESCO addresses these challenges through multiple approaches. The Organization works to strengthen national bioethics committees worldwide, particularly in developing countries, to ensure all nations can participate meaningfully in ethical deliberation and oversight 6 . It also promotes ethics education and encourages member states to incorporate ethics indicators into their sustainable development agendas 6 .
UNESCO promotes ethics education at all levels and encourages member states to incorporate ethics indicators into their sustainable development agendas 6 .
Recent UNESCO reports on emerging technologies like synthetic biology, quantum computing, and space exploration continue to emphasize equitable benefit-sharing as a central concern. The 2025 report on synthetic biology specifically calls for "special attention" to ensuring that potential benefits are "shared equitably" and that unintended risks are carefully managed 3 .
The digital environment presents another frontier for benefit-sharing ethics. As UNESCO's report on children's mental health in digital spaces notes, technology can both empower and harm—providing access to educational resources while also exposing youth to "addictive use patterns, cyberbullying, [and] misinformation" 3 . This dual nature highlights the importance of considering benefit-sharing beyond traditional biotechnology domains.
The rapid advancement of biotechnology presents humanity with a fundamental choice: will we use these powerful tools to create a more equitable world, or will we allow them to deepen existing divisions? UNESCO's work reminds us that science does not operate in a moral vacuum—every technological breakthrough carries ethical implications that require collective deliberation.
The principles articulated in UNESCO's declarations—particularly the right to share in scientific benefits—provide a moral compass for navigating the uncharted territory of gene editing, synthetic biology, and other emerging technologies.
However, principles alone are insufficient without implementation mechanisms that ensure concrete benefits reach those who need them most.
"As we stand at the threshold of being able to redesign life itself, we would do well to remember the wisdom of French sociologist Edgar Morin, echoed by UNESCO's Director-General: 'as knowledge multiplies, becomes more specialized and fragmented, our ability to envisage all its consequences is undermined. This is why ethics is more necessary than ever' 3 ."
Our shared biological future depends on our ability to balance scientific innovation with ethical responsibility, ensuring that the biotechnology revolution benefits all of humanity, not just a privileged few.