I’ll be honest, this stuff sometimes scares me.
Last week, my friend asked if I’d edit my future kid’s genes to prevent cancer. I froze. Would I? Should I? What if everyone else does it and my child gets left behind? These aren’t distant sci-fi scenarios anymore.
Scientists are already editing human embryos, creating crops that survive droughts, and curing diseases we thought were impossible to treat. It’s happening in labs right now, while we’re figuring out whether it’s right or wrong.
Here’s what I can’t shake: we’re making decisions that will echo through generations. And frankly, I’m not sure we’re ready.
Core Ethical Dilemmas in Genetic Engineering
Are We “Programming” What It Means to Be Human?
When we talk about editing human genes, we’re essentially asking: what makes us human?
If we can eliminate genetic diseases, upgrade intelligence, or improve physical abilities, are we improving humanity or fundamentally changing it?
Some argue that genetic engineering is just an advanced form of medicine, helping people live healthier, happier lives. After all, we already use technology to treat diseases and uplift our abilities.
What’s the difference between wearing glasses to improve vision and editing genes to prevent blindness?
But critics worry we’re crossing a line. They argue that our imperfections, struggles, and genetic diversity are part of what makes us human.
When we start “programming” perfect humans, do we lose something essential about the human experience?
Consent and Autonomy: Speaking for the Unborn
Here’s a mind-bending ethical puzzle: how do you get consent from someone who doesn’t exist yet?
When scientists edit genes in embryos, they’re making irreversible changes that will affect that person for their entire life and potentially the lives of their children as well.
Parents make medical decisions for their children all the time, but genetic engineering is different. These changes are permanent and hereditary.
If you edit out a disease gene, future generations will never have that gene either. Some see this as a gift, freeing families from genetic diseases forever. Others see it as taking away future generations’ right to choose.
What if we edit out genes that cause disabilities, but future society learns to better accommodate those differences?
What if we accidentally remove genes that provide unknown benefits? These are irreversible decisions with consequences we can’t fully predict.
Genetic Discrimination: The New Class System
Perhaps the most troubling possibility is that genetic engineering could create a new form of inequality. Imagine a world where genetic upgrades are available but expensive.
Wealthy families could give their children stronger immune systems, higher intelligence, or better athletic abilities. Meanwhile, unenhanced children might find themselves at a permanent disadvantage.
This isn’t just speculation. We already see discrimination based on genetic information in some contexts. Some employers or insurers try to avoid people with genetic predispositions to certain diseases.
If genetic upgrades become common, could we see a society divided between the genetically improved and the “natural” humans?
Government & Official Positions on Genetic Engineering Ethics
1. U.S. Policy (FDA)
- Federal funds are prohibited for research on heritable genetic modifications (passed to future generations).
- Concerns: unknown long-term effects, lack of consent from future generations.
- Allowed: gene therapies treating existing diseases in individuals (non-heritable).
2. National Academies of Sciences
- Promotes global consensus on genetic engineering ethics.
- Hosts international summits with scientists, ethicists, policymakers, and the public.
- Stresses transparency, public engagement, and the distinction between therapy vs. improvement.
3. International Responses
- European Union: restrictive, bans/regulates GMO crops over safety/environmental concerns.
- United Kingdom: more permissive, allows limited embryo research under strict rules.
- Challenge: patchwork of regulations leads to “research tourism”; global cooperation needed.
Societal and Philosophical Perspectives
One of the biggest ethical debates in genetic engineering is the line between medical treatment and human improvement.
While most agree that curing diseases is acceptable, questions arise when traits like intelligence, height, or appearance are involved, since these exist on a spectrum.
Beyond philosophy, access and equity are major concerns: if improvements are costly, they could widen socio-economic gaps, but if therapies are accessible to all, they might reduce inequality.
Ultimately, because these technologies affect society as a whole, decisions cannot be left to scientists alone.
Public engagement through citizen panels, surveys, and open discussions is essential to ensure that genetic engineering develops in ways that respect both human flourishing and democratic values.
Case Studies & Status Updates
1. CRISPR Babies Scandal (2018)
What Happened
- In 2018, Chinese scientist He Jiankui announced that he had created the first gene-edited babies, twin girls code-named “Lulu” and “Nana,” by editing their embryos using CRISPR/Cas9 to remove the CCR5 gene, a modification intended to confer some resistance to HIV.
- The move was conducted without proper ethical approvals, oversight, or transparency, and raised numerous questions about safety, consent, and necessity.
Consequences
- He Jiankui was sentenced in 2019 to three years in prison and fined 3 million yuan for “illegal medical practices.” Collaborators also received punishments.
- His experiments were widely condemned by the scientific community, both inside China and internationally.
What’s the Status Now
- He was released from prison in April 2022.
- Since release, he has claimed that the children (Lulu, Nana, and a third baby, “Amy,” born in 2019) are healthy and developing normally. However, these claims are not verified through independent scientific publications.
- He has expressed interest in pursuing more gene editing work (for example, rare genetic diseases like Duchenne muscular dystrophy and Alzheimer’s), but claims that future work will follow ethical and regulatory constraints.
- Still, many scientists remain concerned about the transparency, oversight, and long-term consequences of his previous work. Also, there’s limited verifiable data on the edited gene effects or long-term health of the children.
2. GMO Foods – Golden Rice
What Happened
- Golden Rice is a genetically engineered variety of rice developed to produce beta-carotene (a precursor to vitamin A) in the edible portion (endosperm) of the rice grain. This was intended to fight vitamin A deficiency (VAD), especially in poor areas where rice is a staple and the diet is less varied.
- It was first developed in 1999-2000, with licenses that allow smallholder farmers in poorer countries to use the rice without paying royalties.
Support vs Criticism
- Supporters argue that Golden Rice is safe, cost-effective, and can prevent VAD (which causes blindness, impaired immunity, and increased mortality).
- Critics raise concerns about environmental impacts, corporate control, biodiversity, and whether Golden Rice delivers enough vitamin A vs alternatives (diversified diet, supplementation). Some also worry about sociocultural acceptance, regulatory hurdles, and “unknown long-term” effects.
What’s the Status Now
- Golden Rice has now cleared regulatory approval in some countries. For example, the Philippines became the first country to approve the commercial cultivation of Golden Rice.
- In the Philippines, the strain called Malusog Rice (Golden Rice variety) has been granted biosafety permits, and planting has started in multiple provinces. Pilot-scale deployment is underway, aiming for larger-scale cultivation by late 2024.
- Still, opposition remains in some areas, including legal challenges or social pushback (for example, over fears about health, environment, or acceptance) in the Philippines.
- Golden Rice is in the process of being adapted into local rice varieties, assessing its agronomic performance and beta-carotene levels in field trials.
3. Gene Therapies for Rare Diseases
What’s the Context
- Rare genetic diseases are those with low prevalence, often with little or no effective treatment. Gene therapy offers a chance to directly correct or compensate for genetic defects.
- These therapies are experimental, high-cost, and often involve risks. They also raise ethical issues around long-term effects, access, cost, and informed consent.
Some Recent Examples & Regulatory Developments
- In 2023-2024, several gene therapies have been approved in the US, EU, and elsewhere for various rare diseases.
- One example is exagamglogene autotemcel (brand name Casgevy) — this is a CRISPR/Cas9-based therapy for treating sickle cell disease and transfusion-dependent beta-thalassemia. It is the first CRISPR-based medicine to be approved by the FDA for those diseases.
- Another example: the FDA expanded approval of Elevidys (delandistrogene moxeparvovec) for Duchenne muscular dystrophy (DMD) to include both ambulatory and non-ambulatory individuals aged 4 and above.
Current Status & Trends
- As of early 2025, over 30 cell and gene therapies are approved by the FDA.
- More approvals are expected: expert projections are that 30-50 additional cell & gene therapy products could be approved globally by 2030.
- Regulatory authorities are increasingly using accelerated approval pathways, orphan drug designations, fast track or breakthrough therapy designations, RMAT (Regenerative Medicine Advanced Therapy) pathways, etc., to speed up development and review for rare disease therapies.
Challenges/Ongoing Issues
- High cost of therapies: Many approved therapies are very expensive and may not be widely accessible in developing countries.
- Safety concerns: Many therapies show promise, but long-term effects are still uncertain in many cases. Regulatory bodies require ongoing follow-ups.
- Infrastructure and capacity: delivering gene therapies requires specialized facilities, expertise, and regulatory oversight. In many low- and middle-income countries, this is still underdeveloped.
Going Toward Ethical Responsibility
The genetic engineering community continues to grapple with its ethical responsibilities, recognizing that advances often outpace moral deliberation.
Professional organizations, ethics boards, and international conferences have helped establish guidelines, but challenges remain.
To go through these complexities, several ethical frameworks have emerged: the precautionary principle, which favors caution; benefit-risk analysis, which balances potential harms and gains; and justice-based approaches, which focus on fairness and access.
Yet no single framework offers all the answers.
True progress requires inclusive dialogue, bringing together scientists, ethicists, policymakers, patients, and the public through methods such as citizen juries, stakeholder workshops, and online platforms, to ensure that decisions strike a balance between innovation and societal values.
Wrapping It Up
We can’t uninvent genetic engineering; it’s here, and it’s changing everything. The real question isn’t whether we should use this technology, but how we’ll use it responsibly.
I don’t have all the answers, and honestly, I don’t think anyone does. But I know this: these decisions are too important to leave to scientists and politicians alone. They need our voices, our values, our concerns.
The future of humanity is literally being written right now. Don’t you think you should have a say in it?
What’s your take? Share your thoughts in the comments below. I’d love to hear your thoughts on genetic engineering.
