Enchanting Traits

When I was a sophomore in college, I asked to meet with a biology professor outside of class. He and I discussed rare disease, particularly cystic fibrosis. We discussed biomedical research and infrastructure, which I filed away for later use. And then he hit me with something I never considered, because I was only raised in one community: he said that a big trend for rare disease is abortion, and that that trend is something to be considered when considering the biomedical research system. That elimination of a gene, as opposed to finding a cure, is part of the scientific community conversation. I recall his energized enthusiasm at my desire to help better medical research with the initial objective of first obtaining a nursing lens.?

This was the year a football team left for their new stadium.

It would be nearly another decade before I found myself in the same stadium. Of the two visits, I was there once with a Special Olympics ticket. One of my favorite things about Chicagoland is the Special Olympics support. It was a particularly nice night, similar to the night I had when a best friend took me to his WDSRA prom.?

When it came to the WSDRA prom, the ask itself was so very impressive and kind, and I admired the bravery most. The ask was brave, and his dance floor confidence was brave. That’s what I’ll remember most about the WDSRA prom: the courage.

I had just started social media when I received the Special Olympics ticket to the stadium. I was there with a best friend brother and my dad. That night, I also thought about cystic fibrosis and the new drug possibilities as well. The college professor would be excited, I decided.?

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Better biomedical research brightens, uplifts, hopes. Chicagoland is really good at working toward this, as are other communities. Public professionals, private individuals, prestigious institutions and philanthropists work hard to support it.?

A few years later, I was not surprised to learn that prestigious institutions chased after money and pseudo nonsense spurred by an individual. I was disappointed and surprised that Bill Gates was associated with that individual. Obviously, a history of unapologetic sexual offenses and crimes should be enough to maintain distance. Privately, arrogance and flamboyance of this individual, and his likely foreign intelligence network, was as grotesque as it was cliché. So, privately it was a bummer Bill Gates associated with him. Publicly, it’s important to maintain public trust – including with genetics ethics - when one vocally supports healthcare. Publicly, it should be called out when one scientifically or financially associates themselves with inexcusable, immoral pseudoscience.?

This disappointment need not linger where respect can flourish.

Navigating genetics is nothing new. The scientific community, ethics experts and general public have sought directions and created road posts for decades.?

A summary of genetics history, eugenics history, continued ethics “debates” and remaining scientific questions won’t be detailed here. It is an ongoing issue. There is clear good, as we see with areas like cancer cures or remedy from a life of pain. There is also clear misuse. As far as the general public is concerned, there is some above-the-law powerlessness feel to it all as well; this is unfortunate. Sometimes those road posts get ignored, and sometimes the directions are changed without discussion.?

Navigating genetics, and elimination or selection of genes, within the biomedical research infrastructure is also not new. Perhaps the reminder of courage and confidence is, though.?

There are people who would change up genetic ethics away from public scrutiny, and there are people who would do so without individual consent. Further, there are public officials who would turn a blind eye. In layman’s summary: there are many cowards out there.

On a personal note, now that the right to bear has been nearly removed, with IVF an only option, embryonic testing will be a part of my own fertility processes. At a normal risk age, the consideration of embryonic testing would be like a foreign language to me. While others would find testing an overreach at any age, my now high-risk self does not. To me, a limited, finite number of cells available is the priority.?

From a personal standpoint, seeking superior genes, editing for superior genes, and believing that a collective group of self-proclaimed intelligent humans can even define superior is all overreach. And let’s not even crawl down the enforcement issues involved.?

From a moral standpoint, overreach is wrong, immoral and opens the door to abuse. From an efficiency standpoint, energy and time are wasted dealing with genetic ethics overreach - overreach only visible when the slough overgrowth surfaces. From a public health standpoint, trust in healthcare disintegrates when genetic ethics overreach is allowed. For public health professionals like me, public trust is everything; the overreach nonsense only serves to antagonize. From a medicine standpoint, the argument around attention to treatment and cures research, as opposed to just eliminating a gene through abortion and calling it a day, remains. And from a personal character standpoint, genetics ethics overreach only amplifies cowardice, lack of confidence, lack of conviction, lack of courage.

In summary, from the standpoints of efficiency, public health, medicine and personal character conviction, it is wise to speak up for ethics and morals. It's wise to support genetic ethics. And it is wise to energize treatments, cures and the international biomedical research infrastructure alongside strong ethical enforcement.

I ask that those willing to stand up for ethics in genetics do so with courage. I ask that those excited to find biomedical treatments and cures, as opposed to solely eliminating genes, stand up for it with confidence.?

There is quite a lot to prioritize with biomedical research. Many experts have already worked hard at prioritization, including quality improvement; we cannot speak to their work, because organization and public messaging remains to be seen. Improved collaboration and facilitation are definitely possible.?I look forward to helping ethical biomedical research infrastructure, partnerships and conversations in the future.

It would also be cool to be asked to a dance again, and it would feel good to let the admiration shine.?

Courage and confidence are such enchanting traits. Arrogance need not interrupt.