Anticipating the Privacy and Informed Consent issues of the Neurotechnology Era

In con­junc­tion with the new Nation­al Geo­graph­ic pro­gram “Break­through: Decod­ing the Brain,” com­ing this Sun­day, Novem­ber 15, at 9 pm ET, I was asked to pro­vide my per­spec­tive on a very provoca­tive question:

What if sci­en­tists were able to implant or erase mem­o­ries? For some, like those suf­fer­ing from PTSD this could be life-chang­ing, or do you think this is sci­en­tif­ic inno­va­tion gone too far?

The ques­tion is very time­ly. 30,000+ sci­en­tists and pro­fes­sion­als gath­ered for the annu­al Soci­ety for Neu­ro­science con­fer­ence this past Octo­ber in Chica­go, prov­ing that more peo­ple than ever are work­ing to improve our under­stand­ing of the human brain, and to dis­cover ways and tech­nolo­gies to enhance its health and performance.

Hav­ing just edit­ed a major report on “per­va­sive neu­rotech­nolo­gies,” and the ways in which applied neu­ro­science can help improve health, pro­duc­tiv­i­ty, and more, my first reac­tion is to imag­ine all the great pos­si­bil­i­ties if we were able to “implant or erase mem­o­ries,” such as help­ing deal with men­tal health issues, or accel­er­at­ing learn­ing (what if you could “implant” the capac­i­ties and vocab­u­lary to speak flu­ent Mandarin?).

Coin­ci­den­tal­ly, though, I received the request above while read­ing the arti­cle Med­ical Research: The Dan­gers to the Human Sub­jects, by Mar­cia Angell, at The New York Review of Books. She reminds us that:

Giv­en the Amer­i­can faith in med­ical advances (the NIH is large­ly exempt from the cur­rent dis­il­lu­sion­ment with gov­ern­ment), it is easy to for­get that clin­i­cal tri­als can be risky busi­ness. They raise for­mi­da­ble eth­i­cal prob­lems since researchers are respon­si­ble both for pro­tect­ing human sub­jects and for advanc­ing the inter­ests of sci­ence. It would be good if those dual respon­si­bil­i­ties coin­cid­ed, but often they don’t. On the con­trary, there is an inher­ent ten­sion between the search for sci­en­tif­ic answers and con­cern for the rights and wel­fare of human subjects.

From first-hand expe­ri­ence, speak­ing about brain health and inno­va­tion top­ics to a vari­ety of audi­ences, I know that many peo­ple have con­cerns about pri­va­cy loss and about dimin­ished capac­i­ty for true “informed con­cern,” giv­en the grow­ing knowl­edge gap between experts and every­one else.

Here’s an exam­ple. The US Army, auto­mo­tive com­pa­nies, med­ical and insur­ance com­pa­nies are devel­op­ing neu­rosen­sor-based sys­tems to improve dri­ving safe­ty, employ­ing car-based neur­al detec­tion devices (via eye-track­ing, EEG, or oth­er) to mon­i­tor dri­ver alert­ness and take pre­ven­ta­tive mea­sures, for exam­ple with dri­ver stim­u­la­tion or vehi­cle autopilot/ shut­down systems.

Sounds great, right?

But, what if that data is shared with your insur­ance com­pa­ny? Or, with the police, in real-time? Doing so could cer­tain­ly help reduce acci­dents due to sleepi­ness or drink­ing, but also cre­ate a Big Broth­er-type soci­ety most of us would­n’t want to live in.

To con­tin­ue with the dri­ving exam­ple: Imag­ine that, despite all safe­ty pre­cau­tions, you end up hav­ing an acci­dent. A hor­ri­ble acci­dent. One that leaves you so much shocked, that you nev­er want to dri­ve again.

Would you want to erase that memory?

Prob­a­bly. But con­sid­er poten­tial side-effects. First, giv­en how our brains work (“cells that fire togeth­er, wire togeth­er), more like­ly than not you would also weak­en oth­er asso­ci­at­ed mem­o­ries. Per­haps you would for­get much about the peo­ple you were dri­ving with, even break­ing the love you felt for your spouse, who was in the car too. Sec­ond, you would be less like­ly to learn from that expe­ri­ence, as bad as it was, and less like­ly to dri­ve more care­ful­ly next time.

Instead of eras­ing the mem­o­ry, you might want to con­sid­er alter­na­tives. What if going through a few weeks of vir­tu­al real­i­ty-assist­ed cog­ni­tive ther­a­py helps you man­age the anx­i­ety and the trau­ma, and equips you with a life­long cop­ing skill?

Who should make the deci­sion, and based on what lev­el of knowledge?

We live in excit­ing, trans­for­ma­tion­al times, but we need to be proac­tive about antic­i­pat­ing and mit­i­gat­ing poten­tial issues, align­ing sci­en­tif­ic inno­va­tion to the inter­ests of indi­vid­u­als liv­ing in the here and now. We need to step back for a sec­ond and ask, How do we max­i­mize the ben­e­fits and min­i­mize the risks? That’s a longer con­ver­sa­tion to have, but I believe a crit­i­cal place to start would to 1) estab­lish pri­va­cy stan­dards for gath­er­ing, shar­ing and usage of brain activ­i­ty data, and by 2) strength­en informed con­sent poli­cies, both in research and in prac­tice, to pri­or­i­tize the inter­ests and the brain lit­er­a­cy of every proud brain owner.