Human genetics made inhuman

Lately world leaders have issued statements labeling research into the human genetic blueprint as “one of the most significant scientific projects of all time.” They have also suggested that “to realize the full promise of the research, raw fundamental data on the human genome including the human DNA sequence and its variations should be made freely available to scientists everywhere.”

As of this moment, all I have read about the mapping of human genes has been so upsetting that it only brings to mind the title of the musical Stop the World, I Want to Get Off. I am very far from making my mind up about this difficult issue, but I need to share some of my initial concerns with as many people as possible.

A report cited in Reuters from the Daily Telegraph, London, indicates that “the government plans to allow insurance companies to use DNA testing to assess whether people are at risk of inheriting serious illness and should pay higher premiums.”

I believe strongly in the importance of the market as a means for the distribution of resources in society. However, I also believe that the benefits of development should accrue to all, not leaving any behind. What we now seem to be able to accomplish with research on the human genome multiplies manifold the difficulties of harmonizing these two previously contradicting objectives.

For instance, it would be great if genetics allowed the insurance companies to decide who will pay lower premiums, that is, those with less risk of developing serious illness. However, who will be responsible for those declared genetically second-class citizens, who will be forced to pay double or triple the premium, or who will ultimately be turned down altogether?

This problem is not limited to insurance. Reuters also reported on a conference to be held in mid-April in the United Kingdom in which “Genetic testing of children and testing for physical and social characteristics, as well as medical traits, would be high on the agenda.” Does this imply the possibility that even access to the university will some day be determined in part by genetic analysis?

What would parents who today limit their background search to asking their children who their friends’ parents are do tomorrow? Would they be obliged to ask about their genetic charts? The potential for discrimination is great, and would only reinforce the motivations of overly twisted Darwinists.

This genetic investigation might also represent a serious commercial threat for those countries that are not participating in this area. One of the companies racing to use information from gene mapping to make profits declared that it had hooked up with a center to find genes associated with breast cancer. If the efforts of this company are successful, it will be sitting on a patentable product and would be in a position to become a monopolist in a market with very inelastic demand. Can rationality be guaranteed within the openly declared and not unreasonable intention to obtain profit from the venture?

Many countries have signed commercial agreements that obligate them to respect patents to the extent of having to collaborate with other countries and punish unlawful use of protected discoveries. In the future, advancements in genetic science may force the revision of these accords, to decide whether they are still valid or whether, on the other hand and for the good of the common citizen, they should just look the other way.

What to do? It is very hard to say. Today, and just out of practical considerations, I limit myself to suggesting that all insurance companies design a plan which obligates them to issue policies for all of those who undertake a genetic examination. This policy should cover the negative impact and consequence that could arise from anyone getting access to such information.

I know this is only a Band-Aid, but what else can I do? I am not among those that resign and lie down to cry, even though this matter actually would justify just that.

From The Daily Journal, Caracas, March 2000

From Voice and Noise, Booksurge 2006

https://voiceandnoise.blogspot.com/2006/08/human-genetics-made-inhuman.html

Genes humanos hechos inhumanos 

A mediados de Marzo el Presidente Clinton y el Primer Ministro Tony Blair declararon in a joint statement que research into human genetic blueprint was "one of the most significant scientific projects of all time." Sugirieron también que "To realize full promise of the research, raw fundamental data on the human genome including the human DNA sequence and its variations, should be made freely available to scientist everywhere." Sonaba maravilloso. 

Desde ese momento solo he leido sobre aspectos relacionados con el mapeo de los genes humanos, tan perturbadores,.que a cada momento me recuerda el titulo del musical, Stop the world I want to get off. En la materia me encuentro muy lejos de encontrar una posición pero la angustia que me crea, me obliga a compartirla con muchos. 

Lo peor fue un reporte de Reuters en el cual, citando como fuente al Daily Telegraph de Inglaterra, se indica "The government plans to allow insurance companies to use DNA testing to assess whether people are at risk of inheriting serious illnesses and should pay higher premiums." 

Para alguien que como yo cree tanto en la importancia del mercado como mecanismo de asignación de recursos en la sociedad, como en la necesidad, objetiva y moral, que el desarrollo no solo alcance una parte de la población, y deje rezagada a la otra, las posibilidades que visualize, multiplicaron por mil las dificultades de harmonizar entre los dos algo contradictorios objetivos. 

Que bueno si la genetica permite cobrar una prima mas baja a quién no esta predispuesto a ciertas enfermedades, pero, quién se responzabiliza por el que resulte declarado ciudadano geneticamente de segunda y a quién le exigiran el pago doble, triple, o simplemente le rechazaran una cobertura. 

Lo anterior no se limita a seguros. La Reuter reporta también sobre una conferencias a mediados de Abril en Inglaterra y en la cual "Genetic testing of children and testing for physical and social characteristics, as well as medical traits, would also be high on the agenda." - lo cual dibuja en el horizonte la posibilidad de que hasta el acceso a las universidades se determine por analisis genetico. 

Los padres madres quienes hoy con toda normalidad le preguntan a sus hijos sobre quienes son los padres de sus amigos, qué harán mañana? Estarán en la obligación de preguntar sobre la carta genetica? 

Aparte de su potencial discriminatorio - que solo puede reforzar los argumentos de aquellos genéticamente desviados Darwinistas que buscan la raza suprema, la investigacion genetica también presenta una profunda amenaza comercial para los paises que hoy no tienen una presencia en esta area de la economia. 

Las primeras reacciones a las declaraciones de Clinto y Blair por parte del mercado financiero de empresas y laboratorios dedicado a la ciencia genetica fue negativa - se abre el mercado y se impide el monopolio. A los pocos dias la Casa Blanca declaraba "The whole point of this is to make raw data available so private companies can innovate, create new medicine and treatment and make a profit." y las aguas volvieron a su cause. 

Lo anterior plantea inmensos retos regulativos. Por ejemplo, Celera Genomics, one of the companies racing to use information from gene mapping to make profits, said on Monday it had hooked up with a center to find genes associated with breast cancer. Si los esfuerzos de tal empresa son exitosos obtendra un producto curativo y patentable, y se ubicara como monopolista en un mercado con una demanda inelastica. Como se garantiza la razonabilidad en la declarada y nada equivocada intención de obtener una ganancia. 

Un pais como Venezuela, ha firmado acuerdos comerciales que hoy lo obligan a respetar las patentes, hasta el grado de colaborar y perseguir el uso ilegitimo de estos. En un futuro, el desarrollo genético puede obligar a revisar estos acuerdos, para decidir si se siguen honrando o si, por el contrario, para el bien de sus ciudadanos, debe hacerse la vista gorda. 

Las reacciones emotivas que el tema produce, inspira escribir. Hoy termino proponiendo que las empresa de seguro, de inmediato diseñen un seguro, de caracter obligatorio para todo quien se haga un examen genetico, y que cubra las consecuencias negativas que se puedan derivar de poseer tal informacion. 

Reconozco que lo anterior solo es un pañito caliente, pero qué hago. No soy de los que renuncio y me hecho a llorar - aun cuando en este caso si provoca.