The Most Pressing Issues In Bioethics

Who owns medical and genetic data? How to regulate gene editing? Where is the boundary of enhancing physical or cognitive human capabilities? What to do with biological differences widening the gap of the haves and have-nots? Could we define where is the boundary to augment life? Will we sue robots or algorithms for medical malpractice? With the constant advancement of technology, unprecedented moral, ethical and legal concerns are surfacing. Channeling them into substantial debates will get us closer to their fair solution step by step. Here, we collected the most pressing issues in bioethics.

Bioethicists of the world, unite!

In November 2018, a scientist in China claims to have edited a gene in two human embryos and implanted them in the mother’s womb, resulting in the birth of genetically altered twin girls. The case caused international outrage in scientific circles, and a couple of months later, many scientists called for a global moratorium on gene editing embryos. However, that’s just one story from the ethically challenging situations on the edges of medical scientific innovation.

The billionaires of Silicon Valley, as well as other prime examples of the “haves”, are pouring money into research of longevity and aging, which might result in the even more widening gap between the life expectancies of the affluent and the masses. Dr. David Himmelstein, the co-founder of the Physicians for a National Health Program and a lecturer in medicine at Harvard Medical School, told Healthline that the gap between the wealthiest and poorest Americans is already about 10 years for women and 15 for men – and we could expect an exponential increase there.

Besides, we haven’t even touched upon issues around private and sensitive medical data, not to say genetic data. Who’s the owner, the distributor or the user of that data? What is it worth and who uses it for what purposes? Or what about connected medical devices used for healthy people? Could the use of an exoskeleton be allowed in a warehouse to enhance capabilities? What about brain implants or digital tattoos? Where should or might the augmentation of human bodies or cyborgization stop?

We’re no longer in the realm of science fiction. These issues are real, well and alive. While The Medical Futurist takes an overall optimistic approach to technology and emphasizes its benefits, we have to deal with the dark side – in order to do steps to counter them as soon as possible. Physicians, patients, regulators, and all other stakeholders must prepare for the coming waves of change. To do that, we need to start talking openly about the dangers we face. To spark discourse and urge bioethicists to speak a lot more and a lot louder about the most pressing issues in bioethics, here’s the ultimate list about the ones we consider the most relevant ones.

1) Medical and genetic data privacy

The most important bioethical issue of our times is how to treat data, more specifically how to treat private and sensitive medical and genetic data. How should we secure, share or trade with sensitive data? Should sensitive fitness and medical data be shared with insurance companies? What if you ate red meat and your insurance company immediately raised your insurance rates because you’re not eating healthy enough?

What to do with genetic and genomic data? If you already purchased a direct-to-consumer genetic test or any other one, what can companies do with your data? Can you delete it or force the companies to make your genetic information disappear? Could it be allowed for companies, research conglomerates or pharma enterprises to purchase or sell such data, and if anyone does that, how to set the price for it? What is the price for a single person’s sequenced genome? Should there be a price?

These are not far away and remote concerns. For example, in July 2018, GlaxoSmithKline decided to invest $300 million in 23andMe and forge an exclusive drug development deal with the Silicon Valley consumer genetics company to research and develop innovative new medicines and potential cures, using human genetics as the basis for discovery. Ancestry, which maintains a more than 5-million-person consumer database of genetic information, once partnered with Google’s stealthy life-extension spinoff Calico to study aging. Caitlin Curtis, a research fellow at the University of Queensland, estimates 23andMe has made around $130 million from selling access to about a million genotypes, before the GSK deal, implying an average price of around $130. That means if you purchased 23andMe’s genetic test for $100-150, your genetic information could have been bought for another $130 on average price. The question is whether we are okay with that…

2) Cyber attacks against medical devices and systems

Do you remember the WannaCry scandal, the global cyber attack that infected 300,000 computers in 150 countries using hacking tools? It also crippled the National Health Service (NHS) in the United Kingdom. UK hospitals were shut down and had to turn away non-emergency patients after ransomware ransacked its networks. That was the complete and utter failure of the health IT infrastructure.

Since that attack, not only hospitals doubled down on cybersecurity, but Microsoft also started to take cybersecurity in healthcare as seriously as never before. The ransomware exploited a vulnerability that Microsoft had created a patch for two months prior, but many organizations — including hospitals — had not appropriately updated their systems before the attack. But is okaying the updates enough? And did huge medical facilities or tech companies dealing with vulnerable data even do the homework ever since? It doesn’t seem so, although they should! Recently, it turned out that California-based Meditab, a health tech company was leaking thousands of doctor’s notes, medical records, and prescriptions daily after a security lapse left a fax server without a password.

The situation is not rosy regarding the security of medical devices either. In 2011, a researcher from the McAfee tech company demonstrated at a conference in Miami how insulin pumps might be hacked to deliver fatal doses to diabetes patients. According to the latest news, Homeland Security has issued a warning for a set of critical-rated vulnerabilities in Medtronic defibrillators that put the devices at risk of manipulation. The question is – what can we do to protect wearable devices that are connected to our physiological system from being hacked and controlled from a distance? Companies developing such technologies should make sure they are safe and users should be as vigilant as possible when using them.

3) What to do with biohackers?

With the rise of the maker movement, the availability of know-how, raw materials, and an active community, the appearance of “garage solutions” in medicine multiplied. However, they cannot be considered as unambiguously positive or negative. Some people have been working out long-term solutions for serious medical conditions outside of the traditional „ivory tower of medical knowledge” as they considered regulation to be too slow compared to innovation.

Our favorite example is the #wearenotwaiting Twitter-movement for patients suffering from diabetes. The initiator of the community, Dana Lewis, and her husband built a so-called artificial pancreas at home and started to spread the blueprints and know-how on Twitter to other diabetes patients – without waiting for the approval of the FDA or any other agency. Why? Because it works and patients needed it. Dana had been using the device for almost two years by the time the US Food and Drug Administration finally approved it.

On the other hand, experimenting at home with unapproved or not well-tested technologies is dangerous. Does it mean that patients who will be able to scan themselves, 3D print medications at home or even do genetic engineering should also be allowed to do all these? How should we go about biohackers? Where should the line be drawn between supporting innovation and refusing reckless experimentation? Do you think that it’s just another far-fetched, non-existent gobbledygook? Have you heard about the biohacker who tried to do CRISPR therapy on himself at his own home? Josiah Zayner injected his arm with DNA encoding for CRISPR that could theoretically enhance his muscles—in between taking swigs of Scotch at a live-streamed event during an October conference. Now, he believes that wasn’t a good idea.

4) What if healthy people turned to technology?

As technological innovations in the field of medicine and healthcare multiply day by day, it will be more and more usual to augment our bodies with the help of machines. It makes us faster, stronger or more sensitive to the environment. This means that the boundaries of “human-ness” are stretched. How far can we and should we go?

At first, we might experiment with exoskeletons that let warehouse workers lift heavy boxes or allow doctors to stand through operations for more than 10 hours. Those are easily removable mechanic extensions, but what about digital tattoos or other implants? What if someone wants to have a brain implant which lets him experience sensations better? We surely know that could go wrong – just think of the horrible episode of Black Mirror, Black Museum.

However, digital tattoos could also be removed upon request, we assume, but what if people go one step even further in cyborgization and request irreversible changes in their bodies? What if people start asking their doctors to replace their healthy limbs for robotic ones because it would let them run faster? What if they start asking for indelible brain chips to get smarter? Currently, you can get a new nose or larger breasts, what would prevent you from getting new muscles or brain implants?

5) Biological differences based on inequalities in wealth

Both staying healthy and healing from a condition cost enormous sums of money (well, for the average person, not the Bugatti-buying upper 0.1 percent). Americans are even worse off than other developed nations as the US spent 17.8 percent of its GDP on health care in 2016. Meanwhile, the average spending of 11 high-income countries assessed in a report published in the Journal of the American Medical Association – Canada, Germany, Australia, the U.K, Japan, Sweden, France, the Netherlands, Switzerland, Denmark, and the U.S. – was only 11.5 percent.

Moreover, the average cost of hospital stays for cancer patients in 2015 was $31,390, according to U.S. government figures — about half that year’s median household income. In addition, medical expenses are the leading cause of bankruptcy in the U.S, according to a study that indicated about 62 percent of personal bankruptcies in 2007 were reportedly due to medical bills, even though most of those people had insurance — up from about 46 percent in 2001.

It is even reported widely that the differences in the financial background of people cause visible biological differences. As mentioned above, the gap between the wealthiest and poorest Americans is about 10 years for women and 15 for men, so there is a big spread with more affluent people living much longer than the poorer masses. And some are even expecting the widening of the chasm. With the appearance of direct-to-consumer genetics, (for some) affordable whole-genome sequencing, and later on technologies which can truly augment human capabilities – exoskeletons, implants, digital tattoos, artificial limbs and so on – people with the appropriate means will live longer and healthier lives. How can we mitigate the differences? How can we make innovations more accessible to all kinds of communities? At the same time, how do we prepare society for a time when financial differences lead to biological ones?

6) What if we live beyond 130 years?

Since 1840, life expectancy at birth has risen about three months per year. Thus, every year a newborn lives three months longer than those born the previous year. Sweden, which keeps excellent demographic records, documents female life expectancy at 45 years of age in 1840 and 83 today. Experts even believe that with recent breakthroughs in science and medicine coupled with lifestyle changes, this number could reach far beyond 100 years. Tons of ethical and philosophical questions appear with that possibility.

What would longevity bring for the individual and for society? Does a longer life also go hand in hand with a physically and cognitively stable older age? Do we even want to live longer if we cannot keep our bodies fit for the task? And what about our societies? How would governments, institutions, communities and even our ideas about life itself cope with the changes? How could we extend our lifespan beyond 100 years of age if the effects of an aging population already strain our societies? If younger generations cannot sustain the social system to provide care for their elders as they are growing older and older, significant structural changes will be necessary. Are we ready for those?

7) The horrors of bioterrorism

The sensitivity of medical and genetic data is mostly due to fears that they could end up in the wrong hands – and for the time being, nothing can be done to counter a potential attack. Although wrongdoers have to possess very sophisticated skills, so the risks are very low, but there are some experts who worry that precision bioterrorism could appear alongside precision medicine and targeted treatments. That would mean that according to genetic markers or any other biological markers, attackers could choose a target population and tailor their biological attack according to their genetic make-up or medical data. As you cannot change your genome as you do with your passwords or credit cards, anyone can be completely defenseless against such an attack. Some FBI agents reported they worry about healthcare data generated for precision medicine leaving the US vulnerable to such scenarios.

Alongside with that, hacking of medical devices, complete infrastructures, and systems, manipulation of implants, digital tattoos or robots might leave us utterly assailable. As in the far future, robots on the nanoscale could live in our bloodstream or on our eyeballs, some people are also afraid that by using such tiny devices, total surveillance would become feasible – since nothing can remain hidden when there is a robot swimming through your bodily fluids. Let’s do everything in our power to counter these risks and come up with defensive measures as soon as possible.

8) Sexuality becoming technological

Long-distance kisses, hugs, and caresses. Virtual reality porn stars. Sex robots threatening the world’s oldest profession. Technosexuals living with life-sized dolls. At the dawn of a new sexual revolution, it’s time to face where technology may take the most intimate area of our lives, where will that take humanity, where are our boundaries and whether we want any of it.

According to the Future of Sex report written by Jenna Owsianik and Ross Dawson, haptic body suits or social networking sites enhanced with sensual touch interfaces might soon enable fully physical long-distance sex between lovers or hook-up partners thousands of kilometers away. Not to mention the possibility of intimate video chats combining remote sex devices and holographic partners. The authors even estimate that by 2028, that means in ten years (!), over a quarter of young people will have had a long-distance sexual experience. By 2025, 3D-printed body parts could add more realism to the over-the-line sex game.

The other line of innovation includes robots resembling human sex partners. Some futurists even speculated that by 2050, human-robot sex will be more common than human-human sex. But can you imagine having sex with a remote program or a robot? And what if something goes wrong? Do you see such, right now seemingly impossible future news headlines as “Woman Sues Robotics Company for Breaking Her Leg During Sex With Robot”?

These questions cannot be answered by 90-minute-long keynotes and a Q&A session afterward. All kinds of stakeholders need to be brought together by bioethicists to see a vivid palette of opinions, after which, the potential ethical, moral or even legal rules can be set up concerning each of the issues. That doesn’t mean only formal discussions – let’s discuss these bioethical issues at home, at the workplace, and on public forums. This way, we can prepare to exploit the advantages technology offers, while keeping the potential dangers at bay.

And we shall never forget: “Primum non nocere”!