Why should we be paying attention to this program?

Rady’s “birth defect” program concentrates on gene-sequencing.

Gene-sequencing programs, such as this one, will provide entire databases of information about the genetic make-up of many individuals.

Here’s is an oversimplification:  Gene-sequencing is the kind of thing that can tell you what makes a near-sighted person near-sighted, what makes a Deaf person deaf, what makes a person with Williams Syndrome have Williams Syndrome. Admittedly, it’s an oversimplification, but not an exaggeration.

The PR for gene-sequencing currently highlights straight forward birth defects that we all want cured, but expansion of these programs is very probable.  Gene-sequencing can used for many different individuals, and can be used in many different ways.

Gene-sequencing provides information.  Lots of information.

Gene-sequencing gives readily available information for gene-editing.  Gene-editing is the tool that could be used to change those things we learn about.  Gene-editing can already be done (see below).  It is already possible to edit genes in a heritable way.  No matter what is done to slow it down now, the technology is already there.

Together, gene-sequencing and gene-editing can be very beneficial.

However, we need to pay attention because, in a discriminatory world, both information and the tools to use it can be dangerous without proper oversight.  Together, they can be very dangerous.

Special Needs Discrimination is currently a widespread and under-discussed epidemic in our country’s healthcare system.  Gene-sequencing provides the information (and gene-editing provides the tools) which could make this discrimination even worse.

So the question is, when doing gene-sequencing, who should we be collecting this information from?  Who exactly gets to decide when and where gene-sequencing programs exist?  Who decides which traits about a person determines whether they should take part in this program?  Who decides what should be done with the information collected?  Who decides which traits need to be “fixed”?

I’m not saying that gene-sequencing shouldn’t be done.  But gene-sequencing needs to be regulated from the start.  And current regulations are completely insufficient.

In my opinion, regulation should be designed by ethicists, special needs advocates, and others who see the value of the individuals themselves.   Not by the people who are actively taking part in discriminating against them.  Before these programs begin.

And regardless of who is doing the regulating, these programs cannot effectively take place without an open discussion of the Special Needs Discrimination that is currently taking place in healthcare.  Because it is impossible to fix something if we can’t admit it is broken.

It would be disingenuous to do anything less.

In memory of Rowan,

Rowan’s mom (in collaboration with Dr. Daniel Gibbs at UCSD’s Department of Medicine)

 to learn Rowan’s story, and more about Special Needs Discrimination in Healthcare visit http://www.rowansmile.me


The technology behind gene-editing explained: This article states “But that’s a discussion for another day.”  Is it?