Kerbside Consult

When Science Gets Ahead of Us

Twenty-six years ago, medicine stood at the edge of a genetic revolution. Were we ready for what came next?

Cyberdoc — writing on medicine since 1995

In August 2000, Cyberdoc went looking for the human genome.

It wasn't difficult to find.

The Human Genome Project was approaching one of the great scientific milestones of our time. A working draft of the human genome was imminent, and the Internet was full of optimism about what might follow.

The genome was frequently described as our genetic blueprint — the biological instruction book from which human beings were built.

At the time, the Human Genome Project was working with an estimate of somewhere between 50,000 and 100,000 human genes.

The expectation was enormous. Identify the genes responsible for disease and perhaps medicine could begin preventing illness before it appeared, diagnosing it more precisely and eventually correcting some diseases at their genetic source.

Cybermed's August 2000 page on the Human Genome was largely a collection of resources for doctors wanting to understand this new world. But even then, the Human Genome Project recognised that sequencing DNA was not simply a scientific undertaking. The ethical, legal and social consequences of genetic knowledge were considered important enough to have their own programme.

Science was asking:

Can we read the human genome?

A more difficult question was already waiting.

What happens when we can?

Are We Ready?

Two months later, David Quek was asking almost exactly that.

His October 2000 Berita MMA editorial was titled "Chaos & Caprice — The Changing Face & Ethics of Medicine."

Reading it twenty-six years later is fascinating.

David imagined genetic therapies replacing some conventional treatments. He wrote about genetically engineered tissues, replacement organs, robotic and nanotechnological medicine, cloning and genetically manipulated embryos.

Some of it now sounds remarkably prescient.

Some still sounds like science fiction.

And some was simply wrong.

Human reproductive cloning, which David thought would "almost surely" become reality, did not. Microscopic robots repairing blood vessels and clearing ageing cells have not replaced physicians. Genetic therapies have certainly not made pharmacology redundant.

But David's real concern was not whether every prediction would come true.

It was whether medicine's ethical machinery could keep pace with its technological machinery.

He asked:

"Will we be prepared for such challenges?"

We are still answering him.

The Dark Side

A few months later, on 24 February 2001, Dr Ronald McCoy delivered the Sandosham Memorial Lecture to the Malaysian Society of Parasitology and Tropical Medicine.

His paper carried a less ambiguous title:

"Science and Biotechnology: The Dark Side."

The paper is also recorded in the Malaysian Journal of Economic Studies, Volume 37, Nos. 1/2 (2000), pages 147–167, and the lecture text remains preserved in the Vads Corner archive.

Ronald's concern went beyond genetics. He was asking what happens when scientific capability outruns our ability to decide how that capability should be used.

Scientific knowledge could not be separated from the economic, political and ethical systems in which it was used. Biotechnology offered enormous possibilities, but those possibilities also raised questions about commercial interests, inequality, scientific responsibility and how far humanity should go simply because technology allowed it.

There is also a personal reason I wanted to return to Ronald's lecture.

He was the obstetrician who delivered me.

But that is only a footnote to a much larger life. Ronald McCoy became one of Malaysia's most prominent campaigners against nuclear weapons. He served as co-president of International Physicians for the Prevention of Nuclear War and was one of the people whose proposal helped give birth to the International Campaign to Abolish Nuclear Weapons — ICAN — which received the Nobel Peace Prize in 2017.

Ronald died on 1 September 2026 at the age of 96.

His concerns about biotechnology therefore belonged to a question that occupied much of his life:

What responsibility comes with acquiring the power to do something that previously could not be done?

Twenty-five years later, we have the unusual luxury of being able to look back.

So what happened?

We Read the Genome

First, the Human Genome Project succeeded.

A draft human genome sequence was announced in June 2000. An essentially complete reference sequence followed in April 2003.

But even that wasn't quite the end.

Some highly repetitive and technically difficult regions remained unresolved until 2022, when researchers reported the first gapless human genome sequence.

And there was an early surprise.

We did not have 100,000 protein-coding genes.

We did not even have 50,000.

The modern estimate is only around 20,000.

Human biology had not become simpler.

Our understanding of it had become more complicated.

Genes interact with other genes, regulatory sequences, proteins, cells, behaviour and environment. Knowing the sequence was extraordinarily important.

Understanding what it meant was another matter.

Perhaps the genome was less like a blueprint than we initially imagined.

We had learned to read the letters.

Interpreting the book was harder.

Then We Began Editing It

Something even more profound followed.

We learned not only to read DNA but increasingly to change it.

Gene therapy has moved from experimental promise into clinical medicine. Treatments now exist for selected inherited diseases and cancers.

More recently, CRISPR gene editing crossed that boundary too.

CASGEVY edits a patient's own blood-forming stem cells outside the body before returning them to the patient. It is approved in the United States for sickle-cell disease and transfusion-dependent beta-thalassaemia; in July 2026, FDA approval was expanded to eligible children from two years of age.

Something that would have sounded extraordinary when Cybermed wrote about the genome in 2000 is now regulated medicine.

But an entirely different boundary was crossed much less comfortably.

In 2018, Chinese researcher He Jiankui announced the birth of two girls whose embryos had been edited using CRISPR.

The scientific and ethical reaction was overwhelmingly condemnatory.

This was fundamentally different from treating the cells of an existing patient.

Changes introduced into an embryo can potentially enter the human germline and be inherited by future generations.

The World Health Organization subsequently established recommendations and a governance framework covering somatic, germline and heritable human genome editing. WHO has warned against proceeding prematurely with clinical heritable genome editing.

David's genetically manipulated embryo was no longer entirely science fiction.

The technology had moved faster than the consensus about how it should be used.

And Then There Were the Pigs

One of David's more futuristic predictions concerned replacement organs — including genetically engineered or transgenic ones.

That sounded remote in 2000.

It doesn't anymore.

In March 2024, surgeons at Massachusetts General Hospital transplanted a genetically edited pig kidney into a living 62-year-old man with end-stage kidney disease.

The donor pig had undergone extensive genomic modification — 69 genomic edits — intended, among other things, to improve compatibility between the animal organ and the human recipient.

Other experimental xenotransplants have followed.

This is not yet routine transplantation, and considerable questions remain about rejection, infection, durability, ethics and regulation.

But an important boundary has nevertheless been crossed.

The question is gradually changing from:

Can an animal organ be genetically modified sufficiently to function in a human?

to:

Can this be made safe and durable enough to become medicine?

And, eventually:

Who should receive it?

Who Gets the Future?

There was another part of David's 2000 editorial that may have aged better than almost any technological prediction.

He worried about inequality.

What happens when wealthy societies acquire increasingly sophisticated medical technologies while much of the world still struggles to provide basic healthcare?

That question has not disappeared.

It has become more expensive.

CASGEVY entered the American market with a list price of about US$2.2 million per patient. Another sickle-cell gene therapy, LYFGENIA, was listed at approximately US$3.1 million.

These prices were sufficiently challenging that the US Centers for Medicare & Medicaid Services developed a Cell and Gene Therapy Access Model intended to help Medicaid programmes provide access while linking payment to outcomes.

The science is extraordinary.

But a treatment capable of transforming someone's life creates another ethical question when many people who might benefit cannot realistically obtain it.

Twenty-five years ago we asked whether genetic medicine would work.

Increasingly we must also ask:

Who gets it?

The Future Arrives in Malaysia

This is not merely an American or European discussion.

In August 2000, Cybermed directed Malaysian doctors towards genome databases and research programmes largely being developed elsewhere.

Twenty-four years later, Malaysia launched MyGenom, the country's first large-scale population genomics study. Phase I aims to sequence 2,400 healthy Malaysians, with an eventual target of 10,000 genomes, building a reference dataset that better reflects the genetic diversity of our population and can support precision medicine.

The significance is easy to miss.

In 2000 we were reading about other people sequencing humanity.

Today, Malaysia is sequencing Malaysians.

And Malaysia now has something else that would have sounded distinctly futuristic when David and Ronald were writing.

The National Pharmaceutical Regulatory Agency has dedicated guidance for the registration of Cell and Gene Therapy Products. Its second edition was issued in September 2025.

The future we were discussing in Berita MMA has arrived at home.

What Did We Get Right?

Looking back at 2000 and 2001 is humbling.

The Human Genome Project succeeded spectacularly.

Gene therapy became medicine.

Human genome editing became possible.

Genetically modified animal organs entered experimental human transplantation.

Concerns about ethics, commercialisation and unequal access proved justified.

Other predictions did not.

Or perhaps more accurately, they have not happened yet — at least not in the form imagined in 2000.

Human reproductive cloning has not become clinical medicine. Nanorobots have not replaced surgeons. Genetic medicine has not made conventional pharmacology redundant.

But twenty-six years is a dangerous place from which to declare a technological prediction dead.

Nanoparticle-based drug delivery is already part of medicine and increasingly sophisticated nanoscale technologies are under investigation. CRISPR has made human genome modification technically possible in ways that would have been extraordinary in 2000. And artificial intelligence is beginning to perform tasks that once belonged almost entirely to doctors — interpreting images, generating differential diagnoses, summarising records and recommending possible courses of action.

Perhaps the question was never whether technology would replace doctors or surgeons.

It may be whether it will progressively diminish or redefine their role.

And that creates another question:

On whose guardrails?

Who is responsible when an algorithm makes an error? What happens when it confidently points medicine in the wrong direction? Who decides which decisions may be delegated to machines and which must remain human?

The technologies may be different from those imagined twenty-six years ago.

The ethical problem is not.

What Will 2046 Look Like?

There is another problem with looking back at predictions made in 2000.

We are doing it from only 2026.

Twenty-six years feels like a long time. In science, it may not be.

Gene editing is still young. Nanotechnology is advancing. Artificial intelligence is only beginning to enter clinical decision-making. Genetically engineered animal organs remain experimental. Technologies that appear limited today may look very different twenty years from now.

So perhaps we should be cautious about declaring which predictions were wrong.

Human reproductive cloning has not become medicine. Nanorobots have not replaced surgeons. Genetic therapy has not replaced pharmacology.

This is not the end of the story. It is only where we happen to be standing in 2026.

By 2046, the more interesting question may not be whether machines have replaced doctors.

It may be how much of what doctors once did has quietly been handed to them.

Who will make the diagnosis? Who will decide which treatment is best? Who will determine whether a gene should be altered, an embryo modified, an artificial intelligence trusted or an experimental technology used?

And when the answer is wrong, who will be accountable?

Technology will need guardrails.

But guardrails themselves require decisions about values, acceptable risk and responsibility.

Who builds them? Who watches them? And who decides when they may be crossed?

David's predictions therefore deserve another reading in 2046.

Some of the things that sound improbable today may no longer sound improbable then.

Can Our Judgement Keep Up?

There is a temptation when looking back at old predictions to divide them into those that were right and those that were wrong.

I don't think that is the most interesting lesson.

Cyberdoc was excited about what the genome might reveal.

David Quek worried about whether medicine's ethics could keep pace.

Ronald McCoy worried about what happens when scientific power becomes separated from human responsibility.

All three perspectives were necessary.

Science needs optimism. Otherwise we would never attempt something as audacious as sequencing three billion DNA letters or correcting a genetic disease.

Science also needs scepticism. Otherwise possibility becomes confused with proof.

And medicine needs ethics because eventually somebody has to decide not merely whether something can be done, but whether it should be done.

There is an important distinction.

Science can tell us whether something can be done.

Evidence can tell us whether it works and how safely.

Neither, by itself, tells us whether we should do it.

And increasingly there is a fourth question:

Who sets the guardrails — and who remains accountable when we cross them?

That requires something considerably older than genomics.

Judgement.

Ronald McCoy spent much of his life asking what happens when human ingenuity gives us power before it gives us wisdom.

In one arena the technology was nuclear weapons.

In another it was biotechnology.

The technologies were very different.

The question was the same.

Twenty-five years after his Sandosham Lecture, science has answered many of the questions he raised.

It has also created new ones.

Perhaps that was his real warning.

The problem is rarely whether science will advance.

It is whether our judgement can keep up.