Tag Archives: disability

Baby;s feet

Ending Lethal Discrimination before Birth

Tim Bradley  

On March 24 of this year Indiana Governor Mike Pence signed into law legislation that forbids doctors from performing an abortion, before or after the unborn child reaches 20 weeks of post-fertilization age, if the reason for the abortion is based on the “race, color, national origin, ancestry, sex, or diagnosis or potential diagnosis of the fetus having Down syndrome or any other disability.”

In his statement announcing his signing of the bill, Pence said, “I believe that a society can be judged by how it deals with its most vulnerable—the aged, the infirm, the disabled and the unborn.

Nature Journal on Embryo Gene Manipulation: “It’s Time to Give Patients a Voice”

Genevieve Plaster, M.A.  

As the international debate continues on the use of CRISPR gene-manipulating technology on human embryos, Nature journal this week gave serious consideration to concerns about its societal consequences. In a news feature entitled, “Should you edit your child’s genes?” author Erika Check Hayden takes a refreshingly humane approach by asking people with disabilities what they think of the real-life prospect of “editing out” genes responsible for disability before a person is even born.

California’s Assisted Suicide Bill Dies in 2015

Genevieve Plaster, M.A.  

Last Tuesday, a proposed bill to legalize physician-assisted suicide in California was shelved by its primary authors due to lack of support, and is unlikely to be voted on this year. Senate Bill 128, which passed the state Senate last month, would have allowed doctors to prescribe lethal drugs to terminally ill individuals seeking to die. Democratic state Senators Bill Monning and Lois Wolk, who authored SB 128, pulled the bill from the Assembly Health Committee’s schedule of hearings Tuesday after it became clear that enough Assembly Members would not support it to allow passage. Among the opposed Members were a number of Latino Democrats, making up about a third of the committee, who spoke against the bill in the context of their personal experiences.

World Down Syndrome Day & How One Family’s Mission Brightens Futures

Genevieve Plaster, M.A.  

This March 21st marks the 10th year of a worldwide campaign to celebrate and advocate for people with Down syndrome (DS). World Down Syndrome Day always falls on the 21st day of the third month, a meaningful selection representing the third copy of the 21st chromosome, the characteristic possessed by all individuals with Down syndrome.

This year, World Down Syndrome Day will highlight the positive contributions that families make for their loved ones and others in the DS community. The theme, “‘My Opportunities, My Choices’ – Enjoying Full and Equal Rights and the Role of Families,” was appropriately chosen because 2015 is also the 21st anniversary of the International Year of the Family as declared by the United Nations.

Ohio Passes Down Syndrome Bill Requiring Healthcare Professionals to Provide Support Information to Parents

Genevieve Plaster, M.A.  

On December 19, Ohio passed the Down Syndrome Information Act, which requires medical professionals to distribute up-to-date, evidence-based information on Down syndrome to parents who receive the diagnosis, either prenatally or after birth, that their child has Down syndrome (DS). Included in the required material is contact information for support organizations and local resources available to the parents. The Down Syndrome Information Act (Sub. HB 552), sponsored by Rep. Peter Stautberg, was signed into law along with 39 other pieces of legislation by Governor John Kasich last Friday. The bill passed the House and Senate both times with no opposing votes this November and mid-December.

Non-invasive Prenatal Screening Expands Disability Discrimination Abortion

Nora Sullivan, M.P.A  

A recent report on prenatal genetic screening from the New England Center for Investigative Reporting has caused quite a stir. The report showed significant inaccuracies in non-invasive (i.e., using blood tests and not invasive means such as chorionic villus sampling and amniocentesis) prenatal screening and told the stories of a number of women who chose to terminate based on these inaccurate test results. The report, which is the result of a three-month investigation by the group, found that prenatal testing companies are overselling the accuracy of their screening tests and doing little to inform parents and doctors of the major risk of unreliability of these test results – a circumstance that can lead to a multitude of problems.

The Term “Incompatible with Life” is Incompatible with the Best Care

Nora Sullivan, M.P.A  

This past week, a new campaign was launched in Dublin, Ireland seeking to end the use of the term “incompatible with life” to describe unborn children prenatally diagnosed with life-limiting conditions. The campaign, which is calling on the media as well as those in the medical and legal fields to stop using the term, is part of an effort by the group Every Life Counts, which represents families whose children have been diagnosed with such severe conditions as anencephaly and Trisomy 18.