GESTIÓN EN SALUD PÚBLICA: Rethinking disability and procreation

sábado, 10 de septiembre de 2016

Rethinking disability and procreation

Rethinking disability and procreation

by Xavier Symons | 10 Sep 2016 |

In the bioethics community, many academics say humans have a moral imperative to have the best children possible. In the disability community, it's a different story.

Writing in the New York Times this week, poet and disability activist Sheila Black reflected on her own experience of having children with disabilities. Black criticises recent trends in assisted reproductive technology such as increases in genetic screening, and suggests that disability is misunderstood by prospective parents.

I know what the “designer baby” people would say: the more “advantages” — beauty, height, intelligence — the better the life chances, the better the life. But I am not sure I believe them.
Life is more than that.

Black herself has a rare condition known as X-linked hypophosphatemia (XLH), as do her two of her three children. In her opinion piece she suggests that though the children may face a difficult future, they nevertheless can live a life of value, unique to their particular form of embodiment.

Of course, I worry about Walker and Eliza. At the same time, I experience so keenly their blazing necessity, their utter beauty. Once I was walking along between them, and I realized all three of us possessed the same awkward-to-most-people “disabled” way of walking. The rush of identification I felt was almost triumphant. We don’t move like other people, I thought, and who is to say there are not things we have learned uniquely from our way of moving or being?

Black's opinion piece is part of a series of essays and personal reflections published in the New York Times new section Disability.

- See more at: http://www.bioedge.org/bioethics/rethinking-disability-and-procreation/11990#sthash.fo1vCYdQ.dpuf

I’m not very clever with spreadsheets. Never have been. Never will. My consolation, though, is that some people who use them 24/7 may not be either. A study by Australian researchers in the journal Genome Biology found that 20% of genomic papers contain errors because of a simple conversion error in the popular program Microsoft Excel. You see, if the gene Septin 2 is entered, as it usually is, as SEPT2, Excel automatically converts it to a date, 2-Sept. This is an issue that has been known since 2004, but it keeps increasing.

This raises some questions about the usefulness of the reviewing and editorial process at major journals if they are failing to pick up errors like this. And although this is a relatively minor glitch, it also shows once again that science is not infallible, even if it is backed up by sophisticated statistical analysis and acres of figures. Garbage in, garbage out.

By the way, our deputy editor, Xavier Symons, a post-graduate student in bioethics in Melbourne, has just had an article published in the Journal of Medical Ethics on the thorny topic of conscientious objection. Congratulations, Xav!