catapult magazine

Case: A woman undergoes prenatal genetic testing and finds out that the baby she carries has Down syndrome connected to a genetic disorder known as a Robertsonian Translocation. This condition is traced back and they discover that she is a carrier for the Robertsonian Translocation which greatly increases the odds of further children being effected. The woman is overcome with a sense of embracement and does not want anyone to know of her status as a carrier. However, the woman has a brother who is planning a marriage for the summer. The information we know of his sister increases the odds that he is also a carrier for this genetic condition which then increases the odds of his offspring having Down syndrome. Should her brother be informed of this possibility which would require disclosing information about his sister without her consent, or should the confidentiality of his sister be maintained?

Do we have individual right to our DNA or do we share it with our families?

I would say that she ought to tell her brother. But this decision to tell someone else should not be motivated by any idea of a right to know, but rather because it’s in the best interest of all involved (except maybe the child, if they abort it…then again…).

The idea of an individual right to your DNA is an interesting twist on the whole “rights” theory from the Enlightenment. It’s kind of weird to say that we have a right to know the blueprint of our bodies. It’s even stranger to suggest that we ought not to have access to the blueprints of our bodies. And then, there’s the whole “comfort in life and in death”, which is that we don’t belong to ourselves. I guess it’s kind of messed up to reduce “ourselves” to our DNA though. Am I taking your question in an unintended direction?

This could be a very complex situation. Maybe they ought to tell her brothers fiance.
In the interest of community I would think they should tell her brother. I doubt that would stop him from having children though.

Aren’t we also assuming that having children with down syndrom in the community is a bad thing.

I am looking at individual vs. communal rights, but I don?t think knowledge of out DNA oversteps the boundaries of what we ought to know. Just by seeing a family with blue eyes we already know something about their DNA.

Unfortunately for the baby with Down syndrome, the baby does not have say until the third trimester (Canada), and some consider it cruelty to birth a child with DS.

Society suggests that the rights of the individual override the best interest of all involved. (Although quarantining in the SARS cases suggests exception to this ideal. If SARS would be left to run wild we would certainly have natural selection for the fittest in society.) But is it even possible to have individual rights to something that we share with many? Genetic testing is increasing in frequency and presently is governed by an individuals desire to know something about themselves. (Which according to the reformer John Calvin, is, along with knowledge of God, the beginning of wisdom.) If we share our DNA with our biological families, shouldn’t seeking knowledge about it be a family decision instead of an individual?s? If two people share owner ship of a toy store, they must consult eachother on decisions that could drastically effect the company in the furure.

This is a great thing to be discussing. If the person with the knowledge is a medical person, they are under strict legal obligations not to share the info with anyone. The laws on this were recently tightened & only in rare cases (one being, for instance, national security) can one arbitrarily share from a patient’s file.

If I were a sibling here, I would be confronting the person (oh wait, a pregnant woman in a stressfulsituation) no, I might call in my parents, & other trusted family members who do not have big mouths & together we might come up with a plan.

I would want me or someone else to inform my brother were he in that situation. In addition, Can you imagine the sister in law’s reaction if she found out other family members knew & didn’t tell?

I agree with the previous summary of the “enlightenment” era of the individual against the world stuff. Notably on the 32nd anniversary of Roe versus Wade.
Hopefully, maybe people someday can get their DNA (& their fiancee’s DNA) easily read and all risk factors assessed before they have kids.

And

I guess I don’t understand the embarrasement of the first mother. If she has the kid, everyone will know. If not, then how is it affecting her? If it is a family shared condition, then she shouldn’t be embarrased to tell her brother, they are in the same boat…he had it passed on the same as she did. I think a behavior related disease (as aids or herpes often is) would be easier to understand the embarrasement.

The problem with divulging the sister’s DNA information is that you infringe on privacy, and then bring up a whole amount of privacy rights. It’s the same as the downloading issue, and this could be an interesting topic in the Music section. However, let me exemplify my point……I’m all for laws against downloading…..but how do you enforce them?…..There’s the issue of privacy rights again, that’s where I draw the line.

So do I think she should tell her brother? Absolutely. Do I think she should be forced to by the government or whomever is “in the know”? No, that is not their position.
It’s God’s plan, let’s not play God.

What does it mean to play God? If we don’t know, we should figure it out, since God told us to do exactly that! When God designed us to be co-creators with him, did he exclude from us anything having to do with biological tinkering? Is that the one fruit we cannot touch or tend? Not anymore. Christ has opened the doors to the most holy places, even the dwelling of God Himself! So what makes biological life/cloning/reconstructive surgery so holy that we can’t touch it?

In response to grant, the question I would ask is: Who is the ‘we’ that does the biological tinkering. Cloning and genetic engineering are things that ordinary people cannot have control over because they are extremely capital-intensive activities. Therefore we are in a situation where the direction of biological tinkering is determined by a capitalist elite whose primary purpose is to make more money. Most of us will never have any say in which sheep is cloned or which gene is removed. The danger is not genetic manipulation, but when the power of genetic manipulation is the sole proprietorship of an elite few.

good point. And I would say that cloning human beings for selfish financial gain would not be an example of playing God, but playing Man. I’m mostly challenging the notion that human beings are supposed to just stay in some primitive state, following safe traditions and staying “close to the earth” and its “natural state”. There’s nothing wrong with trying to set foot on the moon or seeing if we can clone humans as long as it is done with the right motivations. We’ll no doubt make lots of mistakes and perhaps bring humanity to the brink of destruction, but this is what it has meant to be human for a very long time now.

I agree that humans have been changing environments and organisms for a long time, so in that sense cloning and genetic engineering is nothing new. On the other hand, these activities represent something very new.

A group of 10 naked people with no money can conduct a controlled burn which will change the landscape and make their lives easier in the longrun. Generations of ordinary Aztec farmers eventually changed the corn plant from a common edible weed into a highly productive agricultural staple. Gardeners and farmers can still make choices that will affect the genetic makeup of the produce.

But ordinary people can’t do genetic engineering unless they attach themself to a moneyed institution, in which case they lose control over the direction the project takes. And I can’t clone my dog without massive capital. I would argue that unless these activities are democratized somehow (so that ordinary people are given decision-making power about how these powerful technolgies are used) it would be better not to have them at all.

In the good-ol’ fashioned American way, we should mistrust giving such powerful tools into the hands of governments or corporations, or a combination of the two. The ordinary person has no idea what is going on behind the closed doors of coporate, government, and university laboratories, and I consider this bad, not to mention dangerous for all of us.

Frankly, the quality of life we’ve achieved in North America is not bad in many ways. Now, why don’t we direct our creative energies to figuring out how to live a good life without exploiting others, instead of continuing our maniical quest for categorizing and controlling everything. What more do we want? When will we be satisfied?