Sunday, August 6, 2017

Will Genetic Engineering Save or Sink Humanity?

We cannot let the anecdote rule over us.   We don’t make sound policy if we are swayed by isolated emotional vignettes.  Of course, a vignette describes a living, breathing human being, but we must consider the greater good, the overall context and the risk of letting our hearts triumph over our heads when making general policy.  Consider these examples.

If an expensive drug treatment program keeps 5 addicts clean for 6 months, do we champion this success in asking for funding to be renewed while omitting that 400 enrolled addicts failed?

If an experimental medical treatment seems to be effective in one patient with a stubborn disease, should physicians lurch toward it leaving aside standard treatments which have been subjected to Food and Drug Administration approval and years of clinical experience?

If a high school student attends an SAT prep course and achieves a near perfect score, do we conclude that every student should enroll in this course?

It is natural to be drawn to a shiny object, but on closer review, the shine often tarnishes quickly.

Earlier this week, we learned of an astonishing scientific breakthrough that seems utterly fantastic and futuristic, even though it has actually occurred. Scientists amended the DNA of human embryos to correct a mutation - a genetic defect - that causes a very serious medical disease.   This suggests that with additional research and testing that embryos who otherwise might be destined for misery could be rescued. 

We will hear heartwarming and breathtaking anecdotes that, if considered in isolation, will generate excitement and support. 

Would you argue against the following headlines?

Embryo with fatal cystic fibrosis mutation saved.

Tay-Sachs embryo rescued from fatal outcome.

Hemophiliac embryo expected to live normal life.

As is always the case, there will be ethical mission creep, despite the usual bromides that “scientists and research institutions will conform to the highest ethical standards”.   The fact that there is a fortune to be made in the genetics industry can be expected to alter the direction of our ethical compass.  And, while the initial rollout will be discussing how genetic intervention can reverse the course of devastating and fatal diseases, does anyone believe it will stop there?  Once the concept has been normalized, other medical conditions will be targeted.   The creep will be inexorable.  Boundaries will be shattered.


Einstein said 'God does not play dice with the universe.'

Should we?


Who doesn’t want a perfect child?  Over time, how will all of us regard the disabled community or even folks of average intellect and ability?  Will a disabled person be defined as anyone who is imperfect?

Beyond medical mission creep, I believe there is a very serious risk that genetic engineering will be used to achieve non-medical results. 

Imagine that you are new parents.  If medical science could perform a procedure that would add 20 IQ points to your child, would you pursue it?  Would you submit to a minor DNA tinker that would produce an excellent athlete or a musician?  See where I'm going with this?

Are you really ready for the curtain to rise on the Genetic Engineering Show?  I'm not.  To me, all this sounds like coming attractions of a horror show.






3 comments:

Joan B said...

i have hypertrophic cardiomyopathy and it is not fun, to put it mildly. Relatives have died from it and now I worry about my own child. I sick at the idea that my husband worries about me all the time. Nevertheless I agree with you.

Anonymous said...

Used as an ounce of prevention and rewarded with a ton of cure by omission is ethical. When used to enhance - not ethical. Your first example screams CDC. When we discuss ethics, we do not include biased, omitted, or otherwise tainted truths. In today's world...many know not what ethics, or being ethical truly is as evidence i.e. the world around us has sadly proven. Great points. Thank you.

Michael Kirsch, M.D. said...

Appreciate comments. It is so difficult to create an ethical policy and decision when so many players in the game pursue their own policies or economic interests, though they may claim that their actual motives are altruistic and fidelity toward an ethical outcome. They system is riddled with conflicts on interest.

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