Renate Lindeman imagines such a tax and is forming the idea as part of her formidable activism. Renate studied Art at the Royal Academy for visual arts in The Hague and is the mother of three children; two have Down syndrome and one does not. For many years she has been active in the field of Down syndrome awareness and advocacy, from president of a local Down syndrome society in Canada to spokesperson for the Dutch grassroots parent organization Downpride. She promotes the idea that genetic technology should not be used to de-select people from society but rather to enhance health, life, and society as a whole.
The “pharmaceutical industry” Renate reports, “has a market for prenatal and newborn genetic testing projected to be worth USD 8.37 billion by the end of 2019, growing at a compounded annual growth rate (CAGR) of 26.9%.”
In 2011 Non invasive prenatal test (NIPT) was introduced. This can detect, with reasonable efficiency, if a fetus has Down syndrome in the blood of a pregnant woman. The NIPT has quickly spread across the globe. So fast that governments cannot keep up with the ETHICAL CONSEQUENCES of the widespread availability of this. The Human rights of the disabled are severely compromised. The United Kingdom and Belgium, among others, report that the NIPT is causing a SURGE in demand for prenatal screening. With abortion the result of 92% of screening in 2012, we have a growing disappearance of a large group of citizens simply based on the fact that they are now easily identified prenatally. They are working on screening for autism and other conditions.
Austria, a country with a distinct past when it comes to actively excluding and terminating people with disabilities from society, acknowledges that actively singling out a group for screening based on a condition that is highly compatible with life is NOT HEALTHCARE and should NOT be a governmental task. “A national screening programme for congenital anomalies or aneuploidies is strictly avoided, because doctors and the national health service are NOT interested in terminating as many handicapped individuals as possible.”
The United States also recognizes that active prevention of people with Down syndrome is not a healthcare goal: “Down syndrome screening is no longer listed as a recommended preventive care service by the U.S. Preventive Services Task Force. This renders many insurance policies outdated and may avoid instituting an explicitly eugenic policy under the Affordable Care Act.”
Renate, thinks it is “safe to assume that prenatal selection does not offer health benefits and should not be considered preventive care. The big questions is this: Why should society suffer a decreasing human diversity and its ethical, social and moral consequences while the pharmaceutical industry makes unbridled profits?”
She proposes a Down-tax to be implemented on the pharmaceutical industry developing the NIPT. Down-tax will be a humanity tax applied to the prenatal selection for reason of Down syndrome and other acceptable genetic variations to discourage the practice of narrowing our human diversity. It should be conceived as a levy on the production of genetic screening tests and used to encourage inclusion and equality of persons with Down syndrome and other disabilities in society.
Let’s hope others share her vision. Soon.