Guest Post: Mind the accountability gap: On the ethics of shared autonomy between humans and intelligent medical devices
Guest Post by Philipp Kellmeyer
Imagine you had epilepsy and, despite taking a daily cocktail of several anti-epileptic drugs, still suffered several seizures per week, some minor, some resulting in bruises and other injuries. The source of your epileptic seizures lies in a brain region that is important for language. Therefore, your neurologist told you, epilepsy surgery – removing brain tissue that has been identified as the source of seizures in continuous monitoring with intracranial electroencephalography (iEEG) – is not viable in your case because it would lead to permanent damage to your language ability.
There is however, says your neurologist, an innovative clinical trial under way that might reduce the frequency and severity of your seizures. In this trial, a new device is implanted in your head that contains an electrode array for recording your brain activity directly from the brain surface and for applying small electric shocks to interrupt an impending seizure.
The electrode array connects wirelessly to a small computer that analyses the information from the electrodes to assess your seizure risk at any given moment in order to decide when to administer an electric shock. The neurologist informs you that trials with similar devices have achieved a reduction in the frequency of severe seizures in 50% of patients so that there would be a good chance that you benefit from taking part in the trial.
Now, imagine you decided to participate in the trial and it turns out that the device comes with two options: In one setting, you get no feedback on your current seizure risk by the device and the decision when to administer an electric shock to prevent an impending seizure is taken solely by the device.
This keeps you completely out of the loop in terms of being able to modify your behaviour according to your seizure risk and – in a sense – relegates some autonomy of decision-making to the intelligent medical device inside your head.
In the other setting, the system comes with a “traffic light” that signals your current risk level for a seizure, with green indicating a low, yellow a medium, and red a high probability of a seizure. In case of an evolving seizure, the device may additionally warn you with an alarm tone. In this scenario, you are kept in the loop and you retain your capacity to modify your behavior accordingly, for example to step from a ladder or stop riding a bike when you are “in the red.”
Originally posted in The Conversation
The audience vote is a resounding yes, all Russian track and field athletes should be banned from competing. But is the International Olympic Committee (IOC) justified in giving individual sports federations the right to decide whether athletes can participate in Rio 2016?
In the run-up to the IOC’s decision, anti-doping leaders from 14 countries signed an open letter demanding the Russians’ exclusion. A petition calling for the whole team to be banned was closing in on its aim of 10,000 signatures, while another arguing against a blanket ban had just managed eight.
The IOC decided to face the mob and take a more nuanced approach; it will allow each sporting federation to decide whether the evidence is sufficient to ban athletes in their discipline. Tennis players, who are regularly tested around the world, are in the clear, for instance, with cyclists set to follow.
But athletes in track and field are banned as a group, although individuals may compete as neutral athletes. Is this kind of “collective responsibility” – or “collective punishment” as Mikhail Gorbachev described it – fair?
Standards of evidence
There’s a genuine dilemma here and the situation is not nearly as clear everyone appears to think – and as the World Anti-Doping Agency (WADA) pretends.
In the job market being attractive is advantageous. According to economist Daniel Hamermesh, an attractive man can earn, over a life time, $230,000 more than an unattractive one. Attractive solicitors raise more money for charities. Very attractive individuals are less likely to engage in criminal activities, whereas unattractive ones have higher propensity for crime. Attractive criminals are punished less severely than unattractive ones.
Both children and adults judge attractive people to be more helpful, more intelligent, and more friendly than their unattractive counterparts.
Adults have higher expectations of attractive kids compared to non attractive ones and mothers of attractive infants tend to be more affectionate, playful, and attentive when interacting with their children than mothers of less attractive infants. Teachers expect better performances from attractive students. Transgressions of unattractive children are judged more negatively than transgressions of attractive ones.
One response to unfairness is to get people to stop discriminating unfairly. This might work for some domains, such as employment where interviews could be conducted blind. But it won’t be possible to counteract all the potential downsides.
We can’t require people to like or fall in love with people they find unattractive. There are at least two possible responses:
- Assist people to find attractive what they currently find unattractive
- Assist people to be more attractive to those who currently find them unattractive
Both of these are reasonable solutions. The second is cosmetic enhancement.
Originally posted at The Conversation
It is an open secret: while athletes dope their bodies, regular office workers dope their brains. They buy prescription drugs such as Ritalin or Provigil on the internet’s flourishing black market to boost their cognitive performance.
It is hard to get reliable data on how many people take such “smart drugs” or “pharmacological cognitive enhancement substances”, as scientists call them. Prevalence studies and surveys suggest, though, that people from different walks of life use them, such as researchers, surgeons, and students. In an informal poll among readers of the journal Nature, 20% reported that they had taken smart drugs. And it seems that their use is on the rise.
So, if you are in a demanding and competitive job, some of your colleagues probably take smart drugs. Does this thought worry you? If so, you are not alone. Studies consistently find that people see brain doping negatively.
A main concern is fairness. Imagine that while you are going for a run to boost your mental energy, your colleague is popping Ritalin instead. While you believe in your afternoon nap to regain concentration, your office mate relies on Provigil. Unfair? The general public thinks that taking smart drugs is cheating, because it can give users a competitive edge. In fact, even several academics have argued that brain doping is unfair towards people who don’t do it.
You are on holiday with your partner of several years. Your relationship is going pretty well, but you wonder if it could be better. It’s Valentine’s Day and you find a bottle on the beach. You rub it. A love genie appears. He (or she) will grant you three special Valentine wishes. Here are some of your choices:
- to have more or less sexual desire (lust);
- to remain always as “in love” as you were when you first fell in love (romantic attraction);
- to be more or less bonded to your partner emotionally (attachment);
- to be (happily) monogamous or polygamous.
What would you choose? What should you choose? What would your partner choose? Would you choose together, if you could? What would you choose for your partner?
Nearly everyone would agree that a device or drug that relieves pain, or alleviates symptoms of depression confers a benefit – plausibly, a substantial benefit – on its user. No matter what your goals are, no matter what you enjoy, you are likely to agree that your life will go better if you are not in pain and not depressed: whether you’re a painter, a footballer, a Sudoku-enthusiast or a musician, you will be better able to pursue your projects and engage in the activities you love. It is unlikely that you will even question whether pain relief or alleviation of depression indeed constitute benefits.
This general consensus with respect to medical benefits makes it relatively straightforward for regulators to conduct risk-benefit assessments of medical products when they decide whether a particular product can be put on the market. A very small risk of a mild rash or gastrointestinal upset, for example, will be considered reasonable in the context of effective pain relief, as long as patients or consumers are informed. Even as the risks get more significant, substantial pain relief will be considered a large enough benefit to out-weigh a range of negative side effects in many cases.
So far, so straightforward. Continue reading
Professor Julian Savulescu further discusses this subject at The Conversation
Maria Sharapova has been caught taking the banned performance enhancing drug Mildonium (Mildronate). It was added to the ever growing list of banned substances by WADA in January 2016. She claims to have not read the information sent via email informing athletes of the change of rules and says that she had been taking the drug since 2006 for a magnesium deficiency, an irregular EKG, and her family’s history of diabetes. Mildronate is marketed by the company as a performance enhancer (alongside other uses) and is one of Latvia’s biggest medical exports, accounting for up to 0.7% of its total exports.
Should we feel sorry for her?
Every professional athlete nowadays knows:
- Strict liability obtains – that is, they are responsible for everything they put into their bodies. Ignorance is no excuse.
- If you are taking any potentially, even vaguely performance enhancing substance you have to watch the WADA banned list like a hawk. It is added to on a regular basis. Indeed, substances may not even be specifically named but fall under a generic category of effect, such as accelerating tissue healing.
- If you are taking a banned substance for medical reasons, you need to get a therapeutic use exemption. These are very common: there were at least 550 in cycling from 2008-2014. For example, a cyclist with a diagnosis of asthma can take the beta stimulant, salbutamol. In 2011, 8% of baseballers had a diagnosis attention deficit disorder (and so are allowed to take ritalin, related to amphetamine). Of course, the distinction between health and disease is fuzzy, but that is another story. It is very possible that Sharapova would have been granted a therapeutic use exemption, if she had applied.
Sharapova is a professional. Even if her medical need for what is widely advertised as a performance enhancer is justified, she should have known how to handle the administrative burden around it. Strict liability obtains. She broke the rules and will face the consequences.
The more interesting question is: why was Mildonium placed on the banned list?
Every day, for about thirty-five minutes, I sit cross-legged on a cushion with my eyes shut. I regulate my breath, titrating its speed against numbers in my head; I watch my breath surging and trickling in and out of my chest; I feel the air at the point of entry and exit; I export my mind to a point just beyond my nose and pour the breath into that point. When my mind wanders off, I tug it back.
The practice is systematic and arduous. In some ways it is complex: it involves 16 distinct stages. When I am tired, and the errant mind won’t come quietly back on track, I find it helpful to summarise the injunctions to myself as:
- I am here
- This is it
I alternate the emphases: ‘I am here’: ‘I am here’; ‘I am here’; ‘This is it’; ‘This is it’; ‘This is it.’
I note (although not usually, and not ideally, when I’m in the middle of the practice) that each of these connotations presumes something about the existence of an ‘I’. This is less obvious with the second proposition, but clearly there: ‘This’ is something that requires a subject. Continue reading
The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu
Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.
Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.
JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?
JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur. It could also be used to create embryonic stem cells with precise changes that might make subsequent stem cells, cancer-fighting stem cells, or even stem cells that fight aging. It could also be used to create tissue with say, changes to understand the origins of Parkinson’s disease or Alzheimer’s disease and develop drugs for the treatment of those diseases. This is what I’d call therapeutic gene editing, and because it stands to benefit millions of people who die every year of painful and debilitating conditions, we actually have a moral imperative to do it. What we ought to show more concern for and perhaps ban, is what might be called reproductive gene editing – editing embryos to create live-born babies that are free of genetic disease or perhaps more resistant to common, late-onset diseases or even enhanced in various ways. If we’re concerned about those sorts of changes in society, we can ban reproductive gene editing, yet also engage in the very beneficial research using genetically modified human embryos to study disease.
JB: And Margaret Somerville, what concerns you about this technology?
MS: Well, I’m interested in the division that Julian makes between the reproductive gene editing and what he calls the therapeutic gene editing. I’m a little surprised that he might not agree with the reproductive gene editing – that is, you would alter the embryo’s germline, so that it wouldn’t be only altered for that embryo, but all the descendants of that embryo would be changed in the same way. And up until – actually, up until this year, there was almost universal agreement, including in some important international documents, that that was wrong, that was ethically wrong, it was a line that we must never step across, that humans have a right to come into existence with their own unique genetic heritage and other humans have no right to alter them, to design them. Julian uses the term genetic engineering – to make them, to manufacture them. Where we would disagree completely is with the setting up of what can be called human embryo manufacturing plants, that is, you would create human embryos in order to use them to make products that would benefit other people, you would use them for experimentation, for research. And Julian’s right, we could do a great deal of good doing that – but there’s a huge danger in looking only at the good that we do. And what we’re doing there is we’re using human life as a product. We’re transmitting human life with the intention of killing it by using it as a product, and I believe that’s wrong. I think that human embryos have moral status that deserves respect, which means they shouldn’t be treated just as products.
Written by Toni Gibea
Research Center in Applied Ethics, University of Bucharest
My aim is to show that the decision made by ESL (Electronic Sports League) to ban Adderall in e-sport competitions is not the outcome of a well-reasoned ethical debate. There are some important ethical arguments that could be raised against the ESL decision to ban Adderall, arguments that should be of great interest if we are concerned about the moral features of this sport and its future development.
In the first part of this post I will explain why and when doping became a primary concern for e-sports and I will also sum up some of the officials’ reactions. After that I’ll present the main arguments that could be raised against the idea that the use of Adderall is an obviously impermissible moral practice. My conclusion is that we should treat this subject matter with more care so that in the future decisions in this area will have a stronger moral grounding. Continue reading