Blog Posts (33)
October 1, 2015
<p>Savior siblings are children who are born to provide HLA compatible
body parts, typically umbilical cord blood to be used for bone marrow
transplantation, in order to save the life of their older sibling. They
are created using IVF so that the embryos can be screened in order to
find and implant one that is a match to the existing child. The first
savior sibling, Adam Nash, was born in the US was born in 2000. Lisa and
Jack Nash decided to create a savior sibling after their doctor
suggested it might be the best option for a cure for their daughter
Molly, who was born with a severe type of Fanconi anemia. Immediately
after Adam was born, Molly received a bone marrow transplant using the
umbilical cord blood from her brother. The notion of savior siblings
gained more attention with Jodi Picoult’s book My Sister’s Keeper and
the movie based on the book. In contrast to Adam Nash, the savior
sibling in the book and movie is expected to continue giving bodily to
her sister throughout her childhood, including organ transplantation,
rather than one time umbilical cord donation.</p>
<p>Is it ethical for
parents to create a savior sibling? Some argue that the parents’
intention plays a role in considering whether it is ethical to create a
savior sibling. If the parents were not planning on having any more
children and they are the having the savior sibling only for the sake of
the older child, then there is the concern of using the savior sibling
as a means to an end. If the parents were planning on having more
children, then some claim that the savior sibling is wanted for her/his
own sake and is not being created for just one purpose (i.e. to save the
older child). </p>
<p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;">Doctorate
of Professional Studies in Bioethics, and Graduate Certificates in
Clinical Ethics and Clinical Ethics Consultation. For more information
on AMBI's online graduate programs, please visit our <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
September 18, 2014
<p style="line-height: 19.0400009155273px;">In recent weeks, there’s been talk of three types of genetic testing transitioning from targeted populations to the general public: carrier screens for recessive diseases, tests for BRCA mutations, and non-invasive prenatal testing (NIPT) to spot extra chromosomes in fetuses from DNA in the maternal bloodstream.</p>
<p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">Are these efforts the leading edge of a new eugenics movement? It might appear that way, but I think not.</span></p>
<p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;">When I began providing genetic counseling 30 years ago at CareNet, a large ob/gyn practice in Schenectady, NY, few patients were candidates for testing: pregnant women of “advanced maternal age” (35+), someone with a family history of a single-gene disorder or whose ethnic background was associated with higher prevalence of a specific inherited disease. Their risks justified the cost and potential dangers of the tests.</span></p>
<p style="line-height: 19.0400009155273px;"><span style="line-height: 19.0400009155273px;"><strong style="line-height: 19.0400009155273px;">The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our <a href="/Academic/bioethics/index.cfm">website</a>.</strong></span></p>
May 16, 2014
Deborah Zoe Laufer’s new play, Informed Consent, takes its inspiration from a real-life situation. Drawing on details from a legal dispute in the 1990s between a Native American tribe and Arizona State University, this thought-provoking and surprisingly humorous play tells the story of a genetic anthropologist whose tests on a Native population exceed those for […]
April 25, 2014
BEI Young Professionals member Betsy Campbell covers artful media around the world that touches upon topics in bioethics. The 2013 Drama Decoding Annie Parker tells the story of a major 20th century genetic discovery — that cancer can have a genetic link. The film is based on the true story of a cancer survivor, Annie […]
May 19, 2011
As reported in the Washington Post today, at least two new companies are marketing tests that can identify “sports genes” for your child long before they kick their first soccer ball or pick up a racket.…
August 6, 2010
It is as though the entire world in one week woke up and realized that direct-to-consumer genetic testing is a big deal and perhaps someone should be paying attention to it.…
May 11, 2010
Courtesy of Pathway Genomics and Walgreens Pharmacy, on Friday in 7500 pharmacies around the nation, you too can send your spit off for genetic analysis and find out your genetic predisposition for a wide range of conditions including breast cancer, diabetes, and Alzheimer’s disease, says ABC News.…
September 16, 2009
This is the incredibly provocative question asked by a Children’s Hospital Boston researcher in a recent article published in Archives of Disease in Childhood.…
June 5, 2009
Facebook and other social networking sites. Direct-to-consumer genetic testing. A taxonomy for empirical bioethics.
The issues were so important, so numerous, and so overwhelming that it took a special DOUBLE issue of AJOB to cover them all.…
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July 18, 2013 4:43 pm
As reported in Genetics in Medicine, the researchers investigated DNA test results from three “direct- to-consumer” genome testing companies. The results show that predicted risks differed among the companies and were contradictory for certain traits in certain individuals.
February 11, 2013 2:45 pm
A controversial procedure that lets would-be parents test embryos for certain genetic defects will soon be allowed in special cases in Germany. What does this mean for society? Do people have the right to a healthy child? “No,” says Tina Stark, “they don’t.”
December 12, 2012 2:23 pm
Henry Greely hails a study examining California’s experience of mandatory newborn genetic screening. Saving Babies? covers the history of newborn genetic testing, but the picture it paints is not one of unalloyed success.
October 18, 2012 4:11 pm
We are now reaching a critical juncture where scientific developments in both genetics and neuroscience may soon be able to identify children with a greatly increased risk of engaging in future violent activity. Perhaps the most critical question is, what do we do with such children when we identify them?
August 20, 2012 7:15 pm
For a few hundred dollars and a vial of spit, these companies will search your DNA for sequences that predict your physical traits, your response to certain drugs and your risk for any number of diseases. One such company, California-based 23andMe, is attempting to use the data to do something different: search for new genes linked to Parkinson’s disease. The company, which calls itself the world’s first genetics-based social network, has collected more than 125,000 DNA samples from customers. Criticism of direct-to-consumer genetics companies is nothing new. Many have questioned the ethics of delivering genetic information directly to the consumer, as well as the value and the accuracy of the genetic risks they report.
August 15, 2012 9:41 am
Of course the natural objection is that I’m discussing a problem which doesn’t exist. I wish this were so, but there’s a whole bioethics industry whose bread & butter is to trade in flimsy and specious reasoning, which might appeal to politicians who are will to purchase specious reasoning for purposes of their demagoguery. For example, As Prices for Prenatal Genome Sequencing Tests Fall, Researchers Worry About Consequences for Families in a Real-Life ‘Gattaca’.
August 12, 2012 6:39 pm
The Mercury News editorial page had a great column today from three experts on genetic testing that provides the medical perspective on why a physician should be involved in the direct-to-consumer genetic testing process. They argue that these are indeed medical tests, despite industry arguments otherwise. And the results are complex.
August 8, 2012 3:12 pm
Parents-to-be may be able to have their unborn child screened for homosexuality within a matter of a few years, according to a visiting American expert in bioethics. Professor Robert Klitzman of Columbia University’s Centre for Bioethics has told TV ONE’s Close Up that genetic tests are now being developed to look for autism, alzheimers and various types of cancers. “We may find tests with homosexuality for instance,” he said.
July 30, 2012 12:50 pm
“I think we’ve now entered an era where these direct-to-consumer offerings are beginning to have real medical relevance, and therefore I am in favor of them being done within some regulatory context,” said Evans, a professor of genetics and medicine at UNC’s Medical School.
June 8, 2012 11:30 am
Direct-to-consumer genetic testing (DTCGT) has been freely available on the Internet for more than five years, despite concerns from the professional community. Companies marketing these tests (such as 23andMe and deCODEme) claim they are empowering people to make healthy lifestyle choices, and frequently draw on the principle of autonomy as a central argument. This position is confirmed elsewhere by those who view genomic knowledge as an individual right, including many of the bloggers at Genomes Unzipped. Other scientists and clinicians express skepticism about the clinical validity and utility of DTCGT, and raise concerns about the potential for anxiety and inappropriate testing. The UK, with its large state-run National Health Service and relative lack of private health insurance and providers, is likely to face unique challenges and situations as DTCGT becomes more common.
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