Toward true public engagement about gene editing

The March 22, 2018 edition of Nature includes two thoughtful, helpful commentaries about improving the public dialogue around “bleeding edge” biotechnologies.  In this case, the example is gene editing, of which one commentator, Simon Burall from the U.K., says, “Like artificial intelligence, gene editing could radically alter almost every domain of life.”  Burall’s piece, “Don’t wait for an outcry about gene editing,” can be found here.  The other commentary, “A global observatory for gene editing,” by Harvard’s Sheila Jasanoff and J. Benjamin Hurlbut from Arizona State, can be found here, and an umbrella editorial from the editors of Nature is here.  All are open-access and all are worth reading by any citizen who would like to be informed at even a general level about the ethical discussions of biotechnology.

The three share this tone: more inclusiveness, more humility on the part of scientists, and willingness to have difficult conversations are called for—and have been generally lacking in past efforts to engage the public in discussion of the implications of new biotechnologies.  In the view of Jasanoff and Hurlbut, even the much-admired 1975 Asilomar conference that established boundaries on recombinant DNA research and its applications, was too narrow, focusing on technically-definable risks and benefits but not taking time to reflect more deeply on the ultimate ramifications of what the scientists were doing.  The experts dominate, and lecture—gently, but clearly—the “laity.”  This can create a sort of foregone-conclusion effect: getting people comfortable with the research agenda and the scientists’ and technologists’ (including industry players’) goals is the true point.  The possibility that some work simply should not be pursued for a while may scarcely be expressed, much less heeded.  As Hans Jonas said in a reflection about Asilomar, “Scientific inquiry demands untrammeled freedom for itself.”

Burall, Jasanoff, and Hurlbut seem to be saying, repent from that, as it were.  Don’t just have a panel of a dozen scientists or so meet for a single seminar or webinar with a dozen or so non-scientists (with, I might add, the token clergyperson).  Create a clearinghouse for a wide range of views on what gene editing really might mean, and how humans should respond.  Open the dialogue to a large number, not just a few, non-scientists from a wide range of perspectives.  Pay attention to cultures other than the developed West—especially the global South.  Perhaps start with seminars that are cooperatively organized by several groups representing different interests or stakeholders, but don’t stop there—create a platform for many, many people to weigh in.  And so on.

They don’t suggest it will be easy.  And we do have a sort of clearinghouse already—I call it the Internet.  And we’d want to be sure—contra John Rawls—that viewpoints (yes, I’m thinking of God-centered perspectives) are not disqualified from the outset as violating the terms of the discussion.  And, perhaps most importantly, what threshold of public awareness/understanding/agreement would be insisted upon to ground public policy?  Surely a simple popular majority would be suspect, but unanimity—achievable in smaller groups, with difficulty—would be impossible.  And concerns about “fake news” or populist tendencies run amok (the “angry villagers”) would be unavoidable.

But, as Jasanoff and Hurlbut say, “In current bioethical debates, there is a tendency to fall back on the framings that those at the frontiers of research find most straightforward and digestible…[debate must not be limited by] the premise that, until the technical capability does exist, it is not necessary to address difficult questions about whether [some] interventions are desirable…Profound and long-standing traditions of moral reflection risk being excluded when they do not conform to Western ideas of academic bioethics.”

Bingo and amen.  How to make it happen, I am not sure.  Jasanoff and Hurlbut say they are trying to get beyond binary arguments about the permissibility or impermissibility of germline genome editing, for example.  Still, I don’t see how the “cosmopolitan” public reflection they advocate can go on without agreeing on something like a fairly firm moratorium—a provisional “presumption to forebear,” as I like to put it—while the conversation proceeds.  And hey, we’re the Anglosphere.  We’re dynamic, innovative, progressive, pragmatic, visionary.  We don’t do moratoria.   Moratoria are for those Continental European fraidy-cats.  Then again, these writers are seeking a truly global discussion.  And past agreement by assembled nation-states appears to have at least slowed down things like chemical and biological munitions (recent events in Syria notwithstanding).

These authors are doing us a service with their reflections.  Read their articles, give them a careful hearing—and note that their email addresses are provided at the end.  Maybe I’ll write to them.

Resources regarding ethics of gene editing

Recently, two resources have become available regarding gene editing and the issues raised by it.

First, the National Academies of Science, Engineering, and Medicine have made available an archive of its February 22 webinar about human gene editing.  The home page for the Academies’ human gene-editing initiative is here.  A link to the archived webinar is here.  The slides can also just be viewed here.

Second, Issue 1 of Volume 24 of the journal The New Bioethics is dedicated to human gene editing.  The entire issue, or individual articles from it, are available online for purchase, or for viewing if you have access through an academic institution.  Article titles deal with, for example, differentiating gene editing from mitochondrial transfer, comparing ethical issues with gene editing vs embryo selection, and “selecting versus modifying” to deal with disabilities.

I have not been through these materials in any detail, yet.  The webinar looks a smidge promotional, co-sponsored as it was by the Biotechnology Industry Organization (BIO).  But it also recommends the Academies’ report on the status of human gene editing, and summarizes key recommendations, which include limiting efforts (at least for the present!) to editing “somatic,” or, if you will, “adult” cells to make them into cellular therapies for recognized diseases.  This is well within the existing ethical and regulatory regime governing clinical research and treatment development, as opposed to the deeply problematic prospect of heritable gene editing, or attempts to edit genes for human enhancement, both of which the report and the webinar (at least the slides) counsel that we NOT rush into.  The New Bioethics articles look thoughtful and worth reviewing, which I hope to do (and comment on) in the near future.

The Bioethics of a Modern Death Mask

By the time you read this, a company called Nectome will have pitched its business plan to investors at Y Combinator as a company who has designed a technology called Aldehyde-Stabilized Cryopreservation to preserve all of your connectome, which is all of your brain’s interconnected synapses. Doing this, they argue, can preserve your memories, allowing the company to effectively “upload your mind”. One problem with the technology is that the process is 100% fatal as you have to die during the cryopreservation process to make an accurate connectome.

Oddly, the fact that you have to die for the process to be successful is not considered a deal breaker. Twenty-five individuals have already plunked down the $10,000 deposit to be first on the list to eventually have their brains perfectly preserved in this manner. The process also depends upon future scientists being able to figure out a way to use these perfectly embalmed brains to “reboot” their consciousness. Never mind that no one presently knows how that rebooting process might work or whether the present process captures everything that will be necessary some 100 years in the future when the complete technology will hopefully actually exist. Presumably, smarter people will have all of that detail eventually worked out. What is important at present, particularly if you have a terminal disease, is to preserve your brain so you can be rebooted in the future. A new state law in California called the “End of Life Option Act” makes the application of this novel technology legal for terminal patients (at least as best as can be determined as the legal details have yet to be tested in court). A very nice overview of this new technology and the new company itself may be found in the latest Technology Review article by Antonio Regalado.

There are scientists, such as neuroscientist Ken Hayworth, president of the Brain Preservation Foundation, who believe that a connectome map could provide the basis for reconstituting a person’s consciousness. At its base, this theory assumes that the physical brain is not only the necessary but presumably the sufficient source of consciousness. Capturing the synapse pattern would certainly be essential for recreating the hardware (and perhaps the software) of the brain to restart one’s electrical pattern leading presumably to rebooting one’s consciousness.

I have a couple of ethical problems with this technology, though I am sure there are more. The most obvious is that the process hastens the death of the individual, regardless of their terminal illness. The person will not be dying from their illness but from the cryopreservation process. This technology would not be legally possible without the new California law that will ascribe the death to the terminal illness rather than Nectome’s cryopreservation process, presumably shielding Nectome from product liability suits. Only in California could a terminal patient’s family sue the manufacturer of their vehicle for a malfunction in the brakes that resulted in their loved one’s premature death as they were in the process of driving their loved one to a Nectome facility to die by brain cryopreservation with the hope that the loved one could live again.

Another ethical problem is the transhumanist lure of a brain being rebooted, effectively allowing immortality of one’s consciousness. Aside from the presently unproven science of the rebooting process, who would be the recipient of the successful rebooted consciousness? By that I mean “who” (or what) is regaining consciousness? If the physical brain is the basis for consciousness, and recreating a new but exactly reproduced connectome is the thing that becomes conscious, would it really be you becoming conscious, or someone or something else entirely? Who really enjoys the rebooted memories? What if it is not really you that is being rebooted but someone or something else with your life’s memories? This would be the worst “bait and switch” advertising scam ever devised! What till the FTC begins filling suit. But seriously, are we just our consciousness or a necessary combination of physical mind and body, or a necessary combination of spiritual soul and physical mind/body? What exactly are we? Why do we think we can achieve immortality in the first place? If we can, is the Nectome method the right way of going about this process?

The Christian faith argues for a different process, but uses language such as “dying to self” and being “born again”, which sound similar to Nectome but are indeed very different. Per Nectome, if you die, using our cryopreservation technology, you can live again by regaining your consciousness in the future. The biblical concepts of being born again and dying to self reflects a believer having faith in the salvation offered by Christ’s death on the cross and subsequently humbly subjecting oneself to God’s will rather than one’s own will for the future, both temporally on earth and eternally in heaven.

I recommend the Christian process of being born again rather than the modern death mask soon to be offered by Nectome.

DIY CRISPR Kits – Gene Editing for the Rest of Us

One might think with the amazing advance of technology and easy access to nearly infinite data via the Internet that we, as a society, would see a reduction in false claims of benefit for novel medical procedures and untested medications. Sadly, it seems to be just the opposite. I seem to be spending gradually more time with my patients reviewing the results of their internet research for new solutions for their chronic back pain. Their efforts are laudable even though the “hoped for” benefits claimed in their researched solutions are woefully lacking. Unfortunately, often this exercise in reviewing the outside data takes valuable time away from the remainder of the office visit.

Reviewing false or confusing information is one thing but preventing patients from self-experimentation with untested medications or unproven treatments is another. Enter the biohacker and companies offering do-it-yourself (DIY) kits claiming to allow anyone to experiment with CRISPR (a method of genetic editing) for self-administration. Emily Mullin covers biohacking and DIY CRISPR very nicely in her recent article in the December Technology Review. To me, this has the feel of the 1980s when a curious kid with some basic programming knowledge, an inexpensive computer and a modem can access previously forbidden government systems, potentially unleashing havoc on the rest of us (WarGames, anyone?) After all, now that we know the human genetic code, all we need is for someone to just provide the instructions and tools for editing that code, then anyone could tweak their own DNA. Easy peasy lemon squeezy, right?

Recently, the FDA has been busy trying to prevent medical clinics from administering untested stem cell treatments (see Neil Skjoldal’s recent November blog entry on (Stem Cell Clinics & the FDA). Imagine the significant increase in the scope of the regulatory problem if individuals can order a DIY CRISPR kit off the Internet!

While we might chagrin at the naiveté required to believe the street-side pitch of the Old West Carter’s Little Liver Pill salesman, that same pitch via a modern tech savvy YouTube video (complete with separate internet links) somehow offers a new level of legitimacy. The Technology Review article speculated that one of the featured companies was preparing not a vaccine but a treatment for herpes. In less than 8 weeks from the article’s publication, Aaron Traywick, CEO of Ascendance Biomedical, publically self-injected himself with his firm’s untested and non-FDA approved “treatment” for herpes. The linked article by Reegan Von Wildenradt in the popular magazine Men’sHealth offered an excellent counter as to why this type of “science” might be suspect, including quotes from ethicist Arthur L. Caplan at NYU in support of the standard FDA process for screening medical treatments.

We often lament in this blog that technology is advancing so rapidly that we fail to have a fair public hearing and discussion of the ethics involved in a particular biomedical advance. Now it seems our time may be better spent speaking out first about the basic risks of the new technology and doing our best to support the FDA in their massive task of policing the Internet to prevent a DIY CRISPR kit from falling into the wrong hands – ours.

P.S. – I’m accepting names for the title of the future Hollywood blockbuster where the son of Matthew Broderick and Ally Sheedy injects himself with his own DIY CRISPR-modified DNA and …

Citizenship, Surrogacy and the Power of ART

A recent LA Times article by Alene Tchekmedyian explores a complicated case involving birthright citizenship, surrogacy and same-sex marriage. Briefly, a California man, Andrew Banks, married an Israeli man, Elad Dvash, in 2010. At the time, same-sex marriage was not legal in the US leaving Elad unable to acquire a green card for residency (via the marriage) so the couple moved to Canada where Andrew has dual citizenship. While in Canada, the couple conceived twin boys, Aiden and Ethan, using assisted reproduction technology (ART) whereby eggs from an anonymous donor were fertilized by sperm from Elad and Andrew and then implanted within the womb of a female surrogate and carried to term. When the US Supreme Court struck down the federal law that denied benefits to legally married gay couples in 2013, Elad applied for and was granted his greed card. The present controversy occurred when Andrew and Elad applied for US passports for the twins. US State Department officials required detailed explanation of the boys’ conception, eventually requiring DNA tests which confirmed Aiden to be the biological son of Andrew and Ethan to be the biological son of Elad. Aiden was granted a US passport while Ethan was denied. The family has since traveled to the US (Elad with his green card and Ethan with his Canadian passport and temporary 6 month visa) where they are now suing the State Department for Ethan’s US birthright citizenship. They are arguing that the current applicable statute places them wrongly in the category of children born out of wedlock rather than recognizing their marriage, thus discriminating against them as a binational LGBTQ couple.

Birthright citizenship is a complicated legal arena and I am no lawyer. The US is even more complicated because we allow birthright citizenship to be conferred jus soli (right of the soil) in addition to jus sanguinis (right of blood). The twins were not born in the US so establishing “bloodline” is needed. The law specifies conditions where one parent is a US citizen and one is not a US citizen, and there is further differentiation depending on whether the children of the US citizen were born in or out of wedlock. They also vary depending on whether the US citizen is male or female, with the law more lenient (easier to acquire citizenship) for the child of a woman than of a man.

While the legal challenge here will almost certainly involve potential issues of discrimination of LGBTQ binational couples, the problem is really with the current legal definitions of parent as it relates to surrogacy in general. The State Department actually has a website dedicated answering questions related to foreign surrogacy and citizenship. The real issue is that the State Department relies upon genetic proof of parentage for foreign surrogacy births. In the present case, the surrogacy occurred outside the US, Elad is the genetic father of Ethan and Elad is not a US citizen; therefore Ethan is not a US citizen. While I’m deep in the weeds here, technically, Aiden and Ethan are not fraternal twins in the usual sense but rather half siblings (and this assumes that the donor eggs are from the same woman; otherwise the boys would be unrelated despite sharing the same pregnant womb through the magic of ART). Had Ethan been physically born via surrogacy in the US, he would have acquired his citizenship via jus soli (see US map for surrogacy friendly states near you).

This problem is just as confounding for heterosexual couples using foreign surrogates, and the problem is global. A more detailed technical legal discussion may be found here. A heterosexual couple using donor eggs and donor sperm and using a foreign third party surrogate would have exactly the same problem establishing US citizenship for “their” child. A similar problem would exist for an adopted embryo gestated in a foreign country by a foreign surrogate. If either the egg or the sperm of the US citizen is used for the surrogate birth, the child would be granted birthright citizenship.

The main difference for homosexual couples is that only one spouse can presently be the biological parent. I say “presently” because with ART it is theoretically possible (and may become actually possible in the future) to convert a human somatic cell into either a male sperm or a female egg. At that point, both spouses within a same-sex marriage could be the biological parents of their child. The present legal issue is not the result of a cultural prejudice against anyone’s sexuality but with the biological prejudice of sex itself. ART has the potential ability to blur the categories of sex as culture is now blurring the categories of gender. Should we consider this a good thing?

Given the present technological limits of ART, the simple issue of US citizenship could be resolved in all these cases if the US citizen parent simply adopted the child. Elad correctly points out that while adoption of Ethan by Andrew would grant Ethan US citizenship, it would not grant Ethan birthright citizenship, a necessary requirement for Ethan to someday run for US president. ART may be forcing us to look at changing our definition of parent but should it change our definition of biology? Ethan is the biological son of Elad. He is able to be the legally adopted son of Andrew and enjoy the benefits of US citizenship as currently does his half brother Aiden. He is not able to become the biological son of Andrew and enjoy the additional benefit of birthright citizenship via jus sanguinis.

Should we change the definition of birthright citizenship because ART is changing our definition of parent?

Fertility with frozen eggs: not a sure thing

In case you didn’t see it, the Washington Post has this story about how more women are trying to improve their overall chances of having a baby—particularly in the later reproductive years of their 30’s and 40’s—but success is far from certain.  Human oocytes (eggs) are fragile things, and it was not until recent years that freezing techniques developed to a point that would allow the eggs to survive being frozen and, some time later, thawed (the “freeze-thaw” cycle).  Then, they would be fertilized in the lab, by in vitro fertilization, and implanted into the womb of the would-be mother.

As the article points out, women are born with their entire endowment of eggs, which become less likely to be successfully fertilized and develop into a healthy baby as they, and the woman, age.  Hence a woman’s inexorably declining fertility, particularly from their mid-30’s on.  Freezing eggs for later use is increasingly popular, if one can afford it, or if employers offer it as a perk, as some do, to their female employees.

It’s still expensive, and success appears to depend on the age of the woman (and eggs) at their harvest, and the number harvested and kept in frozen storage.  One must use the qualifier “appears,” because, as the article also points out, reliable statistics are not being kept.  The not-so-subtle implication is that the fertility “industry” wants to sell the process but would rather not know that the ultimate success rate could be as low as, or lower than, the 50-60% rate quoted by New York University.

Clear implications: better data and more transparency are to be desired, and there appear to be at least some remaining biologic limits, strong if not absolute, to reproductive freedom.  Beyond that, as I opined in May of 2013 (fairly bluntly, I do confess) are the radical implications for our concepts of parenthood and begetting children, and for turning said procreation into just plain old, quality-controlled, fully artificial creation.  Things haven’t gotten quite so absolute, yet.  But better quality control of egg freezing and the outcomes, if possible, would be a move in the direction of more artificial reproduction.

It’s a good article from the Post.  Too much to try to do justice to here.  Read the whole thing.

Update on clinical studies of human gene editing

The January 22 edition of The Wall Street Journal carried an article the essential message of which was, “the Chinese are ahead of us in gene editing.”  Specifically, more human clinical trials are active in China than in the US using gene editing in some form to treat people with specific diseases.  Some of these trials use the “hot, new” CRISPR-Cas9 approach to gene editing.  Almost all of the active ones are in China, although one has recently been approved by regulators to begin in the U.S., at the University of Pennsylvania.  That one appears not yet to be recruiting patients.  In most of these “CRISPR” trials, cells are removed from a patient’s body, altered in the laboratory to make them more likely to treat the disease in question (in this case read: attack a cancer), and injected back into the patient.  They are thus variations on a 30-or-so-year-old approach of using cells that have been modified in some way to treat cancer.

The difference here is that the cells have their genes edited, and that raises potential safety risks, such as, what happens if the wrong genes are “edited,” and the altered cells go nuts and do something undesirable?  Because of this, human trials of gene editing in the U.S. are closely regulated, including having to pass scientific and safety review by the “RAC” (that’s for “Recombinant DNA Advisory Committee,” in case the acronym made any of you think of the Spanish Inquisition…then again, I have had researchers who have had to go through it suggest that the analogy is apt…).

The RAC was established back in the late 1970’s when drugs started being made with recombinant DNA, and trials of gene therapy using genes inserted into viruses were conducted.  A famous case of that work going awry raised concerns about oversight, and slowed things down substantially.  And as it stands now, the U.S. regulatory process for this work is cumbersome.  In China, not so much—a local ethics review board looks at a proposal, and off they go.  The WSJ makes it sound like informed consent for the Chinese studies may be a bit thin, too.  U.S. experts are quoted as saying not that we need less regulation, but that they (the Chinese) need more, to bring them back to our speed.

Perhaps so.  My point here is that this work is going on.  Examples like those cited here seem to me to fall under the existing regulatory regime for human trials, and don’t pose the same sort of ethical issues as the potential for inherited gene edits—that is, editing embryos and babies.  That’s a different kettle of fish.

One Chinese CRISPR trial appears not to alter cells outside the body, but actually try to administer the genetic material to make an edit to a cervical cancer-causing gene.  That poses similar safety concerns to other gene therapy approaches, including some with “zinc finger” editing technology, like a currently-active U.S. study to treat hemophilia, a disorder in which someone has a genetic flaw that makes them susceptible to excessive bleeding and the goal is to repair the offending gene.

In considering this work, I think it’s important to distinguish use of the gene-editing approach for incremental steps to treat human disease, like the cell therapy approaches, or true “gene therapy” approaches in which a “corrected” gene is administered to a patient, from the more problematic possibility of editing individuals in ways that can be inherited.  The latter is what worries me.  I wrote about this last November 9 and November 16.   And yes, the current Chinese work should be more closely regulated.  Doubt we have any control over that.

An FDA blog post from a year ago (by the former FDA Commissioner) provides a useful, brief discussion of the FDA’s approach to regulating various applications of genetic editing.  Worth reading.

Selection of embryos in IVF to increase birth rates

A recent article in the Daily Mail brought my attention to recent research by the British assisted reproduction scientist Simon Fishel (see abstract) on a technique which can help select which early developing embryos produced by IVF are most likely to result in a live birth when they are implanted. This technique in evolves repeatedly photographing the developing embryos and using a computerized process to assess which embryos are showing the developmental characteristics that are associated with successful live birth. The study indicates that they were able to achieve a 19% increase in the number of live births in women under age 38 and a 37% increase in live births in women over age 37 by using this technique compared to conventional ways of selecting the healthiest appearing embryos.

On the surface the study appears to be about a simple process for making a particular form of biotechnology more effective and more efficient. What caught my eye from an ethical standpoint was the way in which this study demonstrates how biotechnology is so completely focused on the fulfillment of human desires that it tends to ignore any other concerns. The human desire that drives infertility treatment is the desire to give birth to a baby. The study shows how a particular improvement in technique makes it possible to fulfill that desire in a higher percentage of patients. What is interesting is that the focus on fulfilling that desire is so complete that there is no mention of what happens to the embryos that are not selected when their photographs are input into the computer-generated profile for selecting the best embryos. It also says nothing about whether the babies who are born using this process are healthier or less healthy than those using conventional techniques. The sole focus is on whether the desire to give birth to a baby is fulfilled.

Having technology that can help us fulfill our desires can be beneficial, but effective technology tends to be very focused on what it accomplishes. Life and particularly the moral life is more complex than that. We need to evaluate our desires to see if they are worthwhile. We need to consider what effects it may have on others if our desires are fulfilled. Since technology is successful when it fulfills our desires it may lead us to think that we are doing well when we have effective ways to fulfill those desires, without stopping to consider whether our desires and the means that we choose to fulfill them are good.

Will Medical Compliance Ever Become Non-Voluntary?

A recent article by Dr. Lisa Rosenbaum in the New England Journal of Medicine explored both the benefits and drawbacks of Digital Adherence Monitoring. The focus was on the FDA’s recent approval of Abilify MyCite, a medicine technology that combines the medication aripiprazole, used to treat various psychiatric diseases such as schizophrenia, certain features of bipolar disorder and depression, with a digital ingestion tracking system. This voluntary digital health feedback system (DHFS) works by having the patient wear a skin patch that is triggered when the pill contacts the acid in the stomach. This event is then recorded and tracked on the patient’s smartphone. The patient can then permit their caregivers and/or physicians to access the data via a web portal. The company responsible for the DHFS, Proteus, has shown improvement in patient’s systolic blood pressure using DHFS compared with standard care. The article primarily focuses on using the technology to help doctors work with their patients to determine the reasons for non-compliance.

While this presently voluntary technology obviously can track pill ingestion and this data can certainly help doctors and patients improve medication treatment adherence, I wondered about non-voluntary uses of the technology. This particular DHFS confirms that the prescribed pill was actually ingested regardless of what the patient or their caregiver may claim. Would an insurance company be permitted to have access to this data in exchange for payment for a particularly expensive medication? Could a government agency require such a system in exchange for providing coverage for a patient for a procedure whose subsequent outcome is improved with the use a given medication?

Dr. Rosenbaum offered in her article that she thought it unethical to withhold coronary artery bypass from one of her patients with whom she was fairly certain would not subsequently take the dual antiplatelet therapy post revascularization. Using a DHFS eliminates mere suspicion. Prematurely discontinuing of thienopyridine therapy (antiplatelet drugs such as Effient, Ticlid, or Plavix) after a similar cardiac stent placement has been shown to increase the risk of both re-hospitalization and death within the subsequent 12-month period. Given the success of the Proteus DHFS in reducing systemic high blood pressure, mandating this DHFS to monitor antiplatelet therapy immediately post cardiac stent placement should reduce both patient morbidity and mortality during the following 12-month period.

A consequentialist in charge of public health care expenditures might disagree with Dr. Rosenbaum regarding the ethics of providing a revascularization procedure in an individual who is poorly compliant with beneficial post-procedure medication compliance. Bluntly, why spend the money if the patient (for whatever reason) is going to act in a manner to reduce the benefit of her procedure? Thankfully, money is not the only healthcare utility worth measuring and economists are not yet fully in charge of healthcare delivery, though they appear to have an ever increasingly important seat at the table.

So, I think DHFS technologies such as Abilify MyCite will slowly become non-voluntary.

The Brain and The Internet

The current Technology Review contains an article by Adam Piore featuring Dr. Eric Leuthardt, who, as the title claims, is “The [Neuro]Surgeon Who Wants to Connect You to the Internet with a Brain Implant”. After spending Christmas with my married millennial children, I am convinced there are no further connections required. But Dr. Leuthardt isn’t satisfied with clumsy thumbs and smartphones – he wants a hard-wired, direct brain-to-Internet solution. The article nicely covers both the history and current “state-of-the-art” technology of brain-machine interfaces, as well as the barriers we have yet to solve before Dr. Leuthardt’s dream of a brain-internet connection is a reality. I encourage a full read of the entire article as backdrop to the questions I will focus upon for the remainder of this blog entry. Dr. Leuthardt’s research partner, Gerwin Schalk, a computer scientist focused on decrypting the vast volume of brain electrical signals from the current implants used, sets the stage with the following quote:

“What you really want is to be able to listen to the brain and talk to the brain in a way that the brain cannot distinguish from the way it communicates internally, and we can’t do that right now,” Schalk says. “We really don’t know how to do it at this point. But it’s also obvious to me that it is going to happen. And if and when that happens, our lives are going to change, and our lives are going to change in a way that is completely unprecedented.”

What would it mean for us to develop and implement a brain interface separate from our current physical senses of seeing, hearing, smelling, tasting and touching? What Schalk and Leuthardt want is to develop a brain interface that is as good at receiving sensory input as our current five senses and equally as good at affecting our physical environment as our current voice, arms and legs. But it doesn’t have to stop there (and in fact, I do not believe it would). If the brain cannot distinguish data input via these new artificial links from data input via “normal” physiology, why not insert novel visual, auditory, olfactory, tactile or motor information as well as linkages amongst these – the experiences of which become actual memories. How could one tell memories in which you had actually participated from ones that were virtual? Would it matter? Anyone had any trouble with unwanted Internet ads or computer viruses lately?

For the record, I am generally all-in for most replacement artificial body parts, such as heart, lung, skin, kidney, liver and limbs (allowing for the bioethical concerns generally voiced on this blog). I am admittedly concerned as we develop technologies that start accessing (and potentially augment or replace) portions of the human brain, as I think that this starts to tinker with an individual’s very sense of self – one’s identity. Does altering the brain’s manner of sensory processing potentially also alter the brain’s experience of sense of self? Until we answer that question, we should tinker extremely cautiously or perhaps not at all (I am presently favoring the latter).

Of course, all of this skirts around the larger issue of exactly where my sense of self lies. Does my brain completely contain and therefore solely determine my identity or is my identity part of a more complex interface between the physical brain and a non-physical soul? That is a big question for a six-paragraph blog to answer but one that deserves consideration as we seek to develop artificial interfaces within the brain that not only change the way I experience my environment but potentially how I experience my self.

With regard to hooking my brain directly to the Internet, given what I’ve seen of the Internet to date, I will leave my thumbs and smartphone as my interface of choice, at least for the near future.