Medicine and technology are changing our lives. Who gets to decide what the future will be like?

Genome editing, cloning, artificial intelligence, data mining... Researchers are longing for extensive discussion on which direction science should take. Deciding on what kind of future we want for our planet should not be left to scientists alone.

Sometimes, reading research news can feel like we’re living in a sci-fi future. Meanwhile, the all-pervasive IT is changing our lives almost imperceptibly.

What is morally right? What is acceptable? Do we have to put all of our inventions into practice? Lately, an increasing number of researchers have been calling for discussion on these questions. They want a more extensive debate on the ethical issues in their field.

The limits of research are drawn by funders, the officials granting ethical permits and, ultimately, legislation. However, progress has become so rapid that regulators have fallen behind.

EVERYONE IS INVOLVED

Professor Timo Otonkoski, director of the University of Helsinki’s Biomedicum Stem Cell Centre, has for some time tried to spark discussion about the new questions arising in research. It has not exactly been easy.

“I’ve wondered if people just don’t care about these things,” he remarks

Finns trust researchers, and religious sentiments do not restrict research as they do in some other countries. Nevertheless, Otonkoski would like to see more public debate about scientific ethics.

“Everyone is involved. It shouldn’t just be us scientists, eager to experiment, having this conversation.”

Professor Tommi Mikkonen from the University of Helsinki’s Department of Computer Science agrees.

“Science is constantly pushing the limits of technology, but we should not ignore the human aspect. We engineers talk a lot among ourselves about what our inventions mean and whether we want to live in the kind of world they could create. But sometimes enthusiasm overtakes caution, and we’re excited to do whatever new thing we’ve discovered.”

Together with his researcher colleagues Juha Klefström, Pekka Katajisto and Veikko Launis, Timo Otonkoski has been touring the Science Forum events to talk about the new opportunities afforded by research and the inherent issues. They managed to spark a lively debate between researchers and upper-secondary school pupils in Turku, for example.

FROM TAILORED EMBRYOS TO SUPERHUMANS?

Changing the genome of an embryo is the biggest ethical question in biomedicine. The CrisprCas9 method has made it possible, even easy.

It could be appropriate to edit the genome of a future individual to cure diseases caused by individual genes. On the other hand, in fertility treatments, it’s always possible to choose the healthiest embryo, so why bother editing an unhealthy one?

When it becomes easy to manipulate an embryo, the risk of altering non-pathological features increases. Is this the dawn of the age of the Übermensch?

“That would be unacceptable for me. Human cloning should also be banned, even though I’m sure some people are already working on it,” Otonkoski says.

THE NEW MARGINS

New devices and applications are constantly appearing in a field that is wide open and with no ethical norms. The question “is this morally right” is typically only asked after the fact, at which point it can be difficult to wind down existing use, particularly if business and jobs are involved.

Tommi Mikkonen mentions Airbnb and Uber as digital applications that some cities and countries have only begun to restrict afterwards, once their problems became apparent.

Digitalisation itself is ethically ambiguous.

“People with no IT skills will be pushed to the margins.

Many of them are elderly or disabled.”

HIGH-TECH HOSTAGES

Data protection practices struggle to keep up with increasingly ubiquitous technology. Mikkonen believes entrusting vital social functions to systems that can be hacked is an ethical problem.

“Emergency services, power distribution, phone networks – all of these are susceptible to disruption. This places tremendous pressure on data security.”

According to Mikkonen, it is easier to monitor the quality of data security if society’s key functions are controlled by public authorities.it For this reason, he is troubled by the increase of private health care providers entering Finland’s system with the social and health care reform. Companies wishing to join the new health care scheme must have uniform system and data protection requirements, but setting such requirements may prove challenging.

Mikkonen has himself participated in projects involving the regulation of various medical equipment, such as X-ray machines or monitoring instruments.

“We may be close to the day when a piece of equipment in a Finnish hospital is hacked and held for ransom.”

PIGS AND PEOPLE

Otonkoski has pondered hybrid embryos that combine human and animal cells. What if we could grow a transplant organ for a person, for example a pancreas, in a pig’s body? Otonkoski studies diabetes, and producing new, healthy pancreases capable of normal insulin production is tempting.

The gene responsible for the pancreas growth could be removed from a pig embryo and replaced with human stem cells. The piglet would be born with a pancreas consisting entirely of human cells, with a few per cent of its other cells being human. No such pig exists as of yet, but a group of American researchers recently published an article in the journal Cell, indicating that such a feat could be possible.

“If it’s just the pancreas, it would be easier to accept. A more tricky proposition would be a pig with human cells in its brain. We must think hard about where to draw the line.”

However, Otonkoski does not believe that transplant organs grown in animals are about to flood the field of transplant medicine. There are too many unresolved biological questions, and such spare parts would be tremendously expensive to produce. Another ethical question is for whom new treatments are intended.

“It makes no sense to develop hyper-expensive spare parts for the extremely wealthy. In terms of treating diabetes, it would be far more valuable to learn to understand the disease and develop drug treatments that are accessible to people at all income levels.”

BIG BROTHER IS WATCHING

These days, information is collected and stored on all of us.  It’s easy to dig out old mistakes. ”We can make rules about who can access the information and what they can do with it, but there will always be somebody snooping around.

Not that that’s anything new,” says Mikkonen and further points to the switchboard operators of old, who were infamous for eavesdropping on telephone conversations. Today, the scale is much larger. It’s also signficant who’s doing the snooping.

“My American friends are worried that Huawei is storing its user information in China. I pointed out that American companies are doing the same to me today, but they thought that was completely different,” Mikkonen laughs.

Decoding an individual’s genome has become easy, and can reveal risks for contracting diseases or for risk-taking behaviour, for example.

What if such information were to leak to insurance companies or to employers considering recruitment? Will they be demanding that we release our genetic information in the future?

120-YEAR DEADLINE

Even when researchers and the general public agree that a line of innovation is inadvisable, someone may still pursue it. For example, there are charlatans operating in the field of stem cell medicine, marketing treatments with no proven effects. Such clinics exist in the former Soviet Union and Mexico, for example.

“There’s no proof that these treatments are effective or safe. These people are taking advantage of those in distress and making money off them,” Otonkoski says.

While stem cells that can create blood, cartilage and bone are effective in cancer treatment, the much-lauded pluripotent stem cells, which can become cells of any type, are not yet viable for treatment.

If a breakthrough happens in international research, the University of Helsinki’s Stem Cell Centre is ready to begin clinical use of pluripotent stem cells. Until then, Otonkoski will stick to basic research.

Some time in the future, it may be possible to prevent premature degradation with stem cell treatments. However, Otonkoski does not believe they will be able to lengthen the human lifespan.

“Our maximum lifespan is about 120, and I don’t think that can be extended. Nor do I consider it an appropriate goal. There’s no point in us sticking around for two centuries,” says Otonkoski.

INTELLIGENT ROBOTS

Elon Musk, the CEO of Tesla Motors and visionary investor, has called artificial intelligence the biggest threat facing humankind.  But Tommi Mikkonen isn’t afraid.

“I’m more worried about what we humans will do – particularly the humans currently controlling the world’s nuclear arsenals.”

Mikkonen believes we are a long way from artificial intelligence or robots becoming self-aware. But we may see our own emotions in them.

“My daughter told me to be more polite to our Amazon Echo. It’s a device that looks like a flowerpot and responds to voice commands, but to me it’s just a computer programme. But my daughter was offended on its behalf.”

Israeli historian Yuval Noah Harari has posited that we have already handed over power to algorithms – they trade in the stock exchanged, enclose us in social media bubbles and suggest which candidate to vote for. According to Mikkonen, this is an exaggeration.

“I’m not worried about algorithms. They are made by people and can be controlled by people.

But still there’s the question of responsibility. Who’s accountable if an artificial intelligence makes a mistake or an algorithm causes a stock market crash?”

RIGHT AND WRONG

But could a more robust public discussion be counterproductive for researchers? Do people understand complex scientific issues sufficiently? At worst, such debate could provoke undue fears and result in unnecessary restrictions.

Ideally, the public would listen to researchers and vice-versa in a spirit of mutual understanding.

However, the benefit of the individual does not always align with that of the community. Sometimes going into a morally grey area may feel like the right thing to do.

“It’s easy to categorise things into right and wrong. But if my own child’s life was at stake, I would not hesitate. I would do anything,” says Tommi Mikkonen.

The article has been published in Finnish in Yliopisto magazine 01/18.

 

Bioethics for all

“Bioethics touches all of us, but it’s just getting started in Finland,” says Juli Mansnérus, postdoctoral researcher of law at the University of Helsinki.

Mansnérus works as a legal counsel in the pharmaceutical industry. She is also involved in an Academy of Finland project for personalised medicine, studying its ethical and legal dimensions.

In spring 2015, Juli Mansnérus, historian Heikki Saxén and social psychologist Salla Saxén went to Harvard to meet with major players in the field of bioethics. Encouraged by their experience, the three decided to establish the Finnish Institute of Bioethics. Its objective is to promote diverse discussion that is also accessible to laypeople. Currently, the core group includes a dozen researchers in different fields from Finnish universities.

The Institute of Bioethics organises public seminars which focus on topics such as the potential of care robots and related ethical issues. They intend to organise similar seminars on genetic research.

“Privacy is integral to the use of genetic data,” states Mansnérus.

It’s easy to accept the use of genetic information to develop better treatments: however, an insurance company using gene data to treat clients unequally would be acting unethically.”