Our society will be worse off if we reject Down syndrome children: a view from the archdiocese

Article from the Sydney Morning Herald:

Our society will be worse off if we reject Down syndrome children
http://www.smh.com.au/opinion/society-and-culture/our-society-will-be-worse-off-if-we-reject-down-syndrome-children-20100328-r51x.html

Very interesting comments at the bottom of the article too, from people who disagree.

Eliminating Suffering or Eliminating People?

Below are a couple of articles which help us to explore a world where genetic knowledge is at our fingertips, and lives can be planned or avoided, as the case may be.

Eliminating Suffering or Eliminating People? article by Amy Julia Becker.

No parent wants a child to suffer. Screening tests at every level help humans to eliminate genetic disease and, therefore, human suffering. And yet Christians have good reason to be concerned about the use of these tests, and to advocate for the protection of human life, however it is given to us...

Maybe it's not just the Christians who should be 'concerned'. The use of preimplantation diagnosis (PGD), prenatal diagnosis (PND), and genetic screening, their feasibility and uptake, are increasing at a rapid rate. And with an ever-increasing array of genetic 'conditions' being selected against, what is the logical endpoint?

Reducing people to a medical diagnosis, and the devaluation of disability and illness are themes in a well-written article 'The Gene Genie' by Kathy Evans in The Age, 14 March 2010.

But Dr Leeanda Wilton (Scientific Director of Preimplantation Genetics at Melbourne IVF) also has a practical point of view:

''Given the cost of raising a child with a serious genetic disease - that's a massive cost to the community over many, many years - PGD is very economical. We do not make a profit out of it; we do it because we believe it is a worthwhile service... You have to take into account a family's personal circumstances and the impact of the disease on the family,'' Wilton says.

It's a bit sad when lives get drilled down to dollars and cents. But maybe naive to believe society won't operate like that. And for families who have been terribly affected by a genetic condition, who can blame them for wanting to prevent their children (and themselves) from more suffering?

But what do the rational decisions made by a multitude of well-meaning individuals add up to on a societal level? Eugenics!

Afterthought: And reducing variation runs counter to natural evolution. Nothing religious or superstitious about that.

Keep every American's DNA profile on file

What's the difference between DNA sequencing and DNA profiling? In this article Yale Law student, Michael Seringhaus, explains:

A DNA profile distills a person's complex genomic information down to a set of 26 numerical values, each characterizing the length of a certain repeated sequence of "junk" DNA that differs from person to person...

The genetic privacy risk from such profiling is virtually nil, because these records include none of the health and biological data present in one's genome as a whole. Aside from the ability in some cases to determine whether two individuals are closely related, DNA profiles have nothing sensitive to disclose.

Read the article here:
http://www.dallasnews.com/sharedcontent/dws/dn/opinion/viewpoints/stories/DN-seringhaus_18edi.State.Edition1.27088d3.html

Biopirates!

Sensational stuff. Almost worth fighting for?

http://www.cpa.org.au/guardian/2010/1447/11-privatisation.html

Most of the genes... were acquired by theft, more commonly referred to as Biopiracy. Biopiracy involves the monopolisation by private corporations of genetic resources and traditional knowledge or culture taken from indigenous peoples and local communities...

Genome sequencing: Would you do it if you could?

"Having your DNA fully sequenced is the genetic equivalent of space tourism"

It currently costs tens of thousands of dollars to have your genome sequenced, but costs are are coming down at a rapid rate. Pretty soon all of us will realistically be able consider having our genomes sequenced and possibly finding out a lot more about ourselves than we bargained for!

Will you succumb to curiosity, or are you concerned about possible privacy repercussions/current lack of legislation (at least in Australia) protecting this very personal information?

Read about how Glenn Close has made the leap in this article from the UK Times Online:
http://www.timesonline.co.uk/tol/news/science/genetics/article7060870.ece

If you are unfamiliar with the difference between genetic screening, genetic testing and gene sequencing and the associated ethical issues, read this article 'Genomics gets personal' for a bit of background.

Genomics Law Report

US website:

News and analysis from the intersection of genomics, personalized medicine and the law

http://www.genomicslawreport.com/

DNA deception

Edit: More recent article about the same issue 9 March 2010 http://www.texastribune.org/stories/2010/mar/09/blood-drive/

Article from the Texas Tribune 22 Feb 2010:

When they were sued last year for storing baby blood samples without parental consent, Texas health officials said they'd done it for medical research. They never said they turned over the blood spots to the federal government to help build a vast DNA database. A Texas Tribune review of nine years' worth of e-mails and internal documents on the Department of State Health Services’ newborn blood screening program, released after the state settled the case so quickly that it never reached the discovery phase, shows an effort to limit the public’s knowledge of the program.

http://www.texastribune.org/stories/2010/feb/22/dna-deception/

Cracking an ancient code

A Sydney scientist believes Africa can unlock the secrets of disease... Article from the Sydney Morning Herald:
http://www.smh.com.au/world/science/cracking-an-ancient-code-20100218-oedd.html

No need to sugar coat it by saying it's for the "benefit of indigenous people", but this is some interesting research anyway.

Should cops be required to submit DNA samples?

Providing DNA samples as a condition of employment is not yet an issue in law enforcement, but we should contemplate the ramifications should that day arrive

http://www.policeone.com/csi-forensics/articles/2008924-Should-cops-be-required-to-submit-DNA-samples/

Very interesting article from the PoliceOne.com website