The Advent of Digital Twins: Should They Replace Caregivers?

 

It's 2027, and your father is in a rest home suffering from Alzheimer's disease.  You are considering a new service that takes samples of your voice and videoclips of you, and creates a highly realistic 3-D "digital twin" that your father can talk with on a screen any time he wants to.  The digital twin has your voice and mannerisms, and shows up on your father's phone to remind him to take his medicine and furnish what the company offering the service calls "companionship."  In the meantime, you yourself can simply go about your own life without having to do the largely tedious work of getting your father to take care of himself. 

 

Should you go ahead and pay for this service?  Or should you just continue with your daily visits to him, visits that are becoming increasingly inconvenient?

 

I put this scenario a few years in the future, but already academics are considering the ethical implications of using digital twins in healthcare.  Matthias Braun, an ethicist at the Friedrich-Alexander University in Germany, thinks that the answer to this question depends on the issue of how much control the original of the twin exerts over it.  Applying that notion to the situation I just outlined, who is involved, and what benefits and harms could result?

 

The people involved are you, your father, and the organization providing the digital twin.  Digital twins are not people—they are software, so while the digital twin is at the core of the issue, it has no ethical rights or responsibilities of its own. 

 

Consider your father first.  It may be that his mind is so fogged by Alzheimer's disease that he may be completely fooled into thinking he is talking on the phone with and watching you, when in fact he's speaking with a sophisticated piece of software.  So by means of the digital twin, your father may well be persuaded to believe something that is not objectively true. 

 

But people who deal with Alzheimer's patients know that sometimes the truth has to be at least elided, if not downright falsified.  When my wife's father with dementia lived with us, he would often ask, "Where's your mother?"  His wife had died some years previously.  An answer like, "She's not here right now," doesn't strictly violate the truth, but leaves an impression that is false.  Nevertheless, it's likely to be a less disruptive reply than something like, "You dummy!  Don't you remember she died in 2007?"

 

Then consider you.  One alternative to providing the digital twin is to hire a full-time personal caregiver, as some people can afford to do.  Besides the expense, there is the question of whether your father will get along with such a person.  While my father-in-law was with us, we tried hiring a caregiver for limited times so that my wife and I could get a few hours' break from continuous 24-hour caregiving.  Unfortunately, the caregiver—an older man—didn't appeal to his patient, and after one such visit we got an earful of complaints about "that guy," and it didn't work out.  So in addition to being expensive, personal caregivers don't always do the job the way you hoped they would.

 

From your perspective, the digital-twin caregiver has the advantage that if successful, your father will think he is really talking with a very familiar person, and is more likely to follow instructions than if a stranger is dealing with him.

 

So where's the harm?  What could possibly go wrong?

 

Consider hacking.  No computer system is 100% secure, and the opportunities for mischief ranging from random meddling to theft and murder are obviously present if someone managed to gain control of the digital twin's software.  It wouldn't be easy, but a lot of very difficult hacks have been carried out by criminals in the past, and if the motivation is there, they will find a way sooner or later. 

 

Even if criminals aren't interested in messing with digital-twin rest-home caregivers, what if your father starts to like the digital twin more than he likes your real physical presence?  After all, a digital twin could be programmed to have nearly infinite patience in dealing with the repeated questions that dementia patients often ask—"Where's your mother?" being a prime example.  How would you feel if you visit your father some day and he says, "I like you a lot better on the screen than I like you now."? 

 

And even if the digital twin doesn't manage to alienate you, the original of its copy, I can't rid myself of a feeling of distaste that if the twin succeeds in fooling your father into thinking it's really you, a species of fraud has been committed.

 

At a minimum, even a successful digital-twin substitution would mean that once again in our digital world, an "I-thou" relationship, in Martin Buber's terms, has been replaced by an "I-it" relationship.  Instead of continuing one of the most meaningful relationships anyone can have in this life—the relationship with one's father—that relationship would be replaced by one that connects your father to a machine.  Yes, a sophisticated machine, a machine that tricks him into thinking he's talking with you, but a machine nonetheless.  In the greater scheme of things, and even leaving religious considerations aside, it's hard to believe that both you and your father would be ultimately better off if your father spent his days talking with a computer and you went about whatever other business you have instead of spending time with him. 

 

Digital twins are not yet so thick on the ground that we have to deal with them as a routine thing—not yet.  But if the momentum of generative AI keeps up its current pace, it is only a matter of time before they will be a genuine option, and we'll have to decide whether to use them, not only in a medical context but in many others as well.  We should sort out what is right and wrong about their use now, before it's too late.

 

Sources:  Matthias Braun's article "Represent me: please! Towards an ethics of digital twins in medicine"  appeared in 2021 in the Journal of Medical Ethics, vol. 47, pp. 394-400. 

Helping the Mute to Speak

 

Losing the ability to speak is tragic, especially if one's mind is otherwise intact.  Various diseases from encephalitis to stroke to ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig's disease) can destroy the human speech system.  As long as some motor ability is left, victims can communicate by pointing to a sequence of letters on a board or by similar tedious means, but sometimes even that is no longer possible if the disease progresses.  Brain researchers have long sought a way to use the neural impulses in the brain's speech area to actuate an external "speech neuroprosthetic"—a machine that interprets the brain's impulses as speech.  And now, Dr. Edward Chang of the University of California San Francisco and his colleagues have done it.

 

Fifteen years ago, the patient they worked with (now in his 30s) suffered a severe brain-stem stroke that left him mostly paralyzed and unable to speak.  He has communicated since then by moving his head so that a pointer attached to a cap indicates letters on a board.  After extensive experimentation with epileptic surgery patients to determine which regions of the brain carried the most significant signals pertaining to speech, Chang implanted electrodes in the mute patient's brain and connected them to some sophisticated signal-processing systems, which probably involved trainable artificial-intelligence programs.  Then they asked the man to try saying specific sentences and noted the resulting signal patterns.  Eventually, the system was able to recognize these patterns when the man merely thought them with the intention of speaking.  A phrase or sentence takes a few seconds to appear after the patient forms it, but that is already faster than pointing to letters on a board.  Chang says there are many improvements to be made, but the demonstration shows that at least in one case, a speech neuroprosthesis can work.

 

This is a truly remarkable achievement, and in a blog usually devoted to bad news of one kind or another I thought it would be nice to look at something positive for a change.  At the same time, this feat raises all kinds of questions that medical advances raise.  How much would it cost if such a system is commercialized?  How safe is it to go around with wires implanted in your brain?  (Probably not very.)  Is there a less invasive means of detecting the brain impulses than wires directly on the brain?  Who gets to decide which of the thousands of mute people whose disability came about after they learned to talk, will get a chance to use it? 

 

Possibly some lessons can be learned from the analogous, but not quite so invasive, practice of cochlear implantation to remedy profound deafness.  The Wikipedia article on cochlear implants says that as of 2016, about 600,000 people worldwide have received them.  The average cost for the surgery in the U. S. is about $100,000, but if it works (and most of the time it does), society saves a substantial fraction of that cost because expensive special education is no longer needed for the patient.  The first cochlear implants were performed in the 1970s, so the procedure can said to be fairly routine by now.

 

Given the more invasive nature of the speech neuroprosthesis developed in San Francisco, we can suppose the procedure will cost more than a cochlear implant.  But years of development work lie ahead, and there may be issues or complications that arise along the way.  Let's suppose that the R&D goes smoothly and in another decade we have commercial speech neuroprostheses available.  Will that be a net benefit to the patients and to society?

 

This is just a specific example of the judgment called for when any society chooses to allocate scarce resources such as medical care.  One factor the U. S. apparently has going for it in comparison with many other countries is that there are strong financial incentives for companies to spend what it takes to develop advanced new medical products and procedures.  The free market has its downsides, certainly, but the semi-private nature of the way healthcare is paid for in the U. S., although deeply flawed, does have this redeeming feature. 

 

On the other hand, it's likely that not everyone who could benefit from a speech neuroprosthetic will get one.  Some people simply lived and died too early to benefit, but that doesn't mean they inevitably passed their lives in frustration and meaningless existence. 

 

When I taught in Massachusetts I would often have lunch at the student center in the central hotel complex at the University of Massachusetts Amherst, and quite a few times there I saw a married couple, Ruth Sienckiewicz-Mercer and Norman Mercer.  They were easy to spot because they were both shorter than four feet, wheelchair-bound, and Ruth was completely unable to talk. 

 

When she was less than a year old, she contracted encephalitis which left her with cerebral palsy that severely impaired her control of her body except for her face and digestive system.

Her family raised her until she was eleven, when financial difficulties led them to send her to the Belchertown State School, a warehousing facility for such hopeless cases.  She was mistreated as an idiot for years, but finally a sympathetic staff person developed a word board for her.  She became one of the high-functioning residents and was eventually able to move to her own apartment and marry another ex-patient of the school, Norman Mercer.  She then became a disability-rights activist, traveling across America and influencing governments to close warehousing institutions such as the State School, which eventually closed in 1992.  With the help of a co-author, she wrote a book about her experiences before she passed away in 1998.

 

Ruth Sienciewicz-Mercer didn't need a speech neuroprosthesis to do what she did.  Her indomitable spirit and the help of sympathetic bystanders enabled a supposedly disabled person to achieve things that most normally-abled people don't do.  If you believe that Y'shua the Nazarene was able to make the dumb speak by simply telling them to, he made it clear that the healings were not the main point of what he came to do either.  They helped the sufferers who came to be healed, certainly.  But they were only means to an end.  The end itself, the point of it all, was the relationship created between the Healer and the healed.  And that is a lesson we shouldn't forget.

 

Sources:  I thank my wife for pointing out to me the article in The Guardian entitled "Paralyzed man’s brain waves turned into sentences on computer in medical first" at https://www.theguardian.com/science/2021/jul/15/paralyzed-man-brain-waves-sentences-computer-research.  I also referred to the Wikipedia articles on cochlear implants and Ruth Sienciewicz-Mercer.  Her book, I Raise My Eyes to Say Yes, was co-authored with Steven Kaplan and published in 1996.