More than a decade after the historic completion of the Human Genome Project, the ethical, legal and social issues (ELSI) are far from being sorted out. The role of genetic information in the courtroom, in research projects, in for-profit companies, at all stages of pregnancies, and in insurance companies is being negotiated across multiple planes on a daily basis. With so many competing interests, reaching consensus on responsible usage can feel like a pipe dream. Nonetheless, important strides have been made in several of these areas through recommendations, regulations, and tireless advocacy.
Are there lessons to be learned from these struggles that might help ease the growing pains of the upcoming projects to understand the brain?
The brain projects are certainly shaping up to be no less momentous or controversial. According to the 1.2 billion pound, ten-year undertaking in Europe known as the Human Brain Project,
Understanding the human brain is one of the greatest challenges facing 21st century science. If we can rise to the challenge, we can gain profound insights into what makes us human, develop new treatments for brain disease and build revolutionary new computing technologies.
The BRAIN Initiative in the United States (called the cousin of Europe’s Human Brain Project) is no less ambitious. It is set to receive $4.5 billion in federal funding over the next 12 years.
These projects will help make sense of what is probably the least understood part of the human body. The origins of our thoughts, memories, desires, actions, and emotions could become less elusive and provide important keys for helping people deal with neurological disorders.
But already at this early stage, extensive criticisms have been voiced. Most strikingly, the conceptual starting place of even being able to successfully map the brain in an intelligible way has been questioned. New York University research psychologist Gary Marcus recently pointed out in a New York Times op-ed that we don’t even know what a good theory of the brain would look like because “[b]iology isn’t elegant the way physics appears to be.” He continued,
We know that there must be some lawful relation between assemblies of neurons and the elements of thought, but we are currently at a loss to describe those laws... The problem with both of the big brain projects is that too few of the hundreds of millions of dollars being spent are devoted to spanning this conceptual chasm.
Additionally, the methodology and reach of the projects have been criticized. There are now over 700 signatories to an open letter to the European Commission from the European neuroscience community. The letter states that the signing parties will boycott the Human Brain Project unless it is amended to be more open, inclusive and flexible.
There are also huge ethical concerns that need to be addressed more comprehensively in both projects. Nature called them “a laundry list of ethical issues,” including “the responsible use of cognitive-enhancement devices, the protection of personal neural data, the prediction of untreatable neurodegenerative diseases and the assessment of criminal responsibility through brain scanning.”
Another risk worth noting is how the influx of resources and excitement for a single element of human biology can overshadow other important factors and encourage biological determinism, even when such a focus is inappropriate or even harmful. Chipping away at the genetic determinism caused by the HGP has been a challenge. In these brain projects, we have an opportunity to learn from such experiences and not start completely from scratch. Otherwise, in five years time, the “gene of the week” phenomenon could simply become the “neuron of the week.”
Other relevant lessons to remember include appropriate boundaries surrounding patents on the human body, the failures of privacy protection, harm of misinformation in unregulated direct-to-consumer models, the problem with trying to modify things we don’t yet understand, and discrimination against certain kinds of bodies. We really don’t need any more examples of how the “science of the day” can be used to justify harming or devaluing certain groups of people.
Opening up our brains for examination is going to stir up not only these issues, but also completely novel ones. We need to learn from past mistakes and be ready to deal with new issues as they arise. For now, it is heartening to see the amount of discussion taking place around the world about these complexities. Hopefully those at the forefront will not merely be defensive about their “grand vision,” but also realize that incorporating both scientific and social complexity in at the early stages is the best route forward for everyone.