A Bishop’s Perspective
By Bishop Edward Burns
Mahatma Gandhi is reported to have once said that “the measure of a civilization is how it treats its weakest members.” Since coming to Juneau three and half years ago I have been impressed by how Gandhi’s words have been embodied in the dedicated work of so many people and organizations that integrate adults and children with mental and physical disabilities into the life of the community.
In addition to providing children and adults with Down syndrome and other mental and physical disabilities with access to education, job training and housing, our schools, non-profits and volunteer groups work hard to insure their participation in a variety of community events around town such as concerts, plays, the Folk Festival, Special Olympics and other sports events and First Fridays. Last year there was even a film festival, featuring REACH clients who starred in short films they had written and directed. I’m grateful that three out of seven placements for the Jesuit Volunteers who serve in our community are at agencies that assist and support our neighbors with mental and physical disabilities to live fulfilling and independent lives.
I’m proud of our community’s solidarity with our neighbors with disabilities and their families: Juneau would be a poorer place without their active and enlivening presence, participation and inclusion. But by way of contrast, I’m troubled by the ways in which our larger society and culture choses to exclude children who have are diagnosed with Down syndrome and other disabilities before they are born.
Recently, I was shocked but sadly not surprised to learn that back in March a jury in Oregon awarded $2.9 million dollars to parents who sued for “wrongful birth” after their daughter was unexpectedly born with Down syndrome. The baby’s parents sued their medical provider for failing to detect during the pregnancy that their unborn child had this condition.
The mother said in court that if she had known that her daughter had Down syndrome she would have aborted the child (although she stated that she loves her disabled daughter who is now four years old.) She and her husband brought the lawsuit to compel the medical provider to pay for the additional costs over a lifetime of caring for their child.
The supposed “wrongful birth” of a child with Down syndrome turned on a mistake made in prenatal genetic testing. The widespread practice of prenatal testing results in an estimated 90% of unborn children who test positive for Down syndrome being aborted (“Prenatal Test Puts Down Syndrome in Hard Focus” May 9, 2007 New York Times).
Until very recently, medical tests to determine prenatally if an unborn child has the extra chromosome that causes Down syndrome has required either amniocentesis or a non-invasive sonogram and blood tests. However, a newly genetic test reportedly will allow physicians to screen unborn babies for up to 3,500 genetic disorders (including not only Down syndrome, which strictly speaking is not a genetically heritable condition but is a mutation which can occur in any pregnancy) but mutations thought to play a role in autism and schizophrenia.
This impressive scientific and medical achievement doubtless has the potential provide additional information to physicians to aid their treatment of children with genetic disorders. However, it also raises disturbing moral and ethical questions. If the use of prenatal screening for Down syndrome is any indication, this new genetic test will inevitably lead to an even more widespread practice of aborting unborn children with suspected or confirmed undesired genetic traits or mutations.
As a Catholic, it should come as no surprise to anyone that I am pro-life and oppose the intentional taking of innocent human life in every circumstance. While I realize that not everyone in our community shares my pro-life convictions, I believe that all of us should be alarmed by the misuse of new diagnostic technologies that make even easier to identify unborn children with Down syndrome and children with genetic anomalies. Based on what has happened with Down syndrome children, widespread use of these tests will most likely increase social and economic pressure on parents to abort children suspected to have genetic disorders. And these tests will normalize even more the use of abortion eugenically to select not only the sex of children (which is already widespread in many parts of the world) but for or against desired traits (from hair color to intelligence).
This is a deeply disturbing development. Why? Because the practice of aborting children with traits that are deemed to be undesirable or to be burdensome undermines the human dignity of every person and unravels our bonds of solidarity with each other. Our human dignity, at its very foundation, rests on our shared and common humanity. Our worth and value as human beings is intrinsic. It is grounded not in our utility, productivity, ability or status, but on our personhood. Because of our shared dignity as human beings, every person belongs, as a matter of right, to the human community, especially those who are dependent and vulnerable. Tragically, this is not yet the case in our society.
The admirable work of those who support and assist children and adults with disabilities is rooted in respect for their human dignity and in the passionate desire to include them as fully as possible in the life of the community. In this inclusion and care for those with disabilities we see the virtue of solidarity robustly lived out among us and a key measure of the civilization we hope to build together.
Let us work together to expand the circle of those who belong in our community to include the weakest and most vulnerable among us: unborn children and especially unborn children with suspected mental or physical disabilities.
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The Inside Passage 
A Bishop’s Perspective
By Bishop Edward Burns
Mahatma Gandhi is reported to have once said that “the measure of a civilization is how it treats its weakest members.” Since coming to Juneau three and half years ago I have been impressed by how Gandhi’s words have been embodied in the dedicated work of so many people and organizations that integrate adults and children with mental and physical disabilities into the life of the community.
In addition to providing children and adults with Down syndrome and other mental and physical disabilities with access to education, job training and housing, our schools, non-profits and volunteer groups work hard to insure their participation in a variety of community events around town such as concerts, plays, the Folk Festival, Special Olympics and other sports events and First Fridays. Last year there was even a film festival, featuring REACH clients who starred in short films they had written and directed. I’m grateful that three out of seven placements for the Jesuit Volunteers who serve in our community are at agencies that assist and support our neighbors with mental and physical disabilities to live fulfilling and independent lives.
I’m proud of our community’s solidarity with our neighbors with disabilities and their families: Juneau would be a poorer place without their active and enlivening presence, participation and inclusion. But by way of contrast, I’m troubled by the ways in which our larger society and culture choses to exclude children who have are diagnosed with Down syndrome and other disabilities before they are born.
Recently, I was shocked but sadly not surprised to learn that back in March a jury in Oregon awarded $2.9 million dollars to parents who sued for “wrongful birth” after their daughter was unexpectedly born with Down syndrome. The baby’s parents sued their medical provider for failing to detect during the pregnancy that their unborn child had this condition.
The mother said in court that if she had known that her daughter had Down syndrome she would have aborted the child (although she stated that she loves her disabled daughter who is now four years old.) She and her husband brought the lawsuit to compel the medical provider to pay for the additional costs over a lifetime of caring for their child.
The supposed “wrongful birth” of a child with Down syndrome turned on a mistake made in prenatal genetic testing. The widespread practice of prenatal testing results in an estimated 90% of unborn children who test positive for Down syndrome being aborted (“Prenatal Test Puts Down Syndrome in Hard Focus” May 9, 2007 New York Times).
Until very recently, medical tests to determine prenatally if an unborn child has the extra chromosome that causes Down syndrome has required either amniocentesis or a non-invasive sonogram and blood tests. However, a newly genetic test reportedly will allow physicians to screen unborn babies for up to 3,500 genetic disorders (including not only Down syndrome, which strictly speaking is not a genetically heritable condition but is a mutation which can occur in any pregnancy) but mutations thought to play a role in autism and schizophrenia.
This impressive scientific and medical achievement doubtless has the potential provide additional information to physicians to aid their treatment of children with genetic disorders. However, it also raises disturbing moral and ethical questions. If the use of prenatal screening for Down syndrome is any indication, this new genetic test will inevitably lead to an even more widespread practice of aborting unborn children with suspected or confirmed undesired genetic traits or mutations.
As a Catholic, it should come as no surprise to anyone that I am pro-life and oppose the intentional taking of innocent human life in every circumstance. While I realize that not everyone in our community shares my pro-life convictions, I believe that all of us should be alarmed by the misuse of new diagnostic technologies that make even easier to identify unborn children with Down syndrome and children with genetic anomalies. Based on what has happened with Down syndrome children, widespread use of these tests will most likely increase social and economic pressure on parents to abort children suspected to have genetic disorders. And these tests will normalize even more the use of abortion eugenically to select not only the sex of children (which is already widespread in many parts of the world) but for or against desired traits (from hair color to intelligence).
This is a deeply disturbing development. Why? Because the practice of aborting children with traits that are deemed to be undesirable or to be burdensome undermines the human dignity of every person and unravels our bonds of solidarity with each other. Our human dignity, at its very foundation, rests on our shared and common humanity. Our worth and value as human beings is intrinsic. It is grounded not in our utility, productivity, ability or status, but on our personhood. Because of our shared dignity as human beings, every person belongs, as a matter of right, to the human community, especially those who are dependent and vulnerable. Tragically, this is not yet the case in our society.
The admirable work of those who support and assist children and adults with disabilities is rooted in respect for their human dignity and in the passionate desire to include them as fully as possible in the life of the community. In this inclusion and care for those with disabilities we see the virtue of solidarity robustly lived out among us and a key measure of the civilization we hope to build together.
Let us work together to expand the circle of those who belong in our community to include the weakest and most vulnerable among us: unborn children and especially unborn children with suspected mental or physical disabilities.
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