By Renate Lindeman

The science behind prenatal genetic selection fails to recognize that cutting off a portion of our human species that we consider ‘less worthy’ will alter the humanity of the species that live on.

A woman drags her son, who has a range of health and mental issues, to a doctor. ‘Doctor Freud’, she starts, my son abuses drugs, is kicked out of school, cannot do anything for himself and hurts himself’. ‘Poor upbringing’, is the doctors’ verdict. Insulted the women walks into the office next door for a second opinion. ‘Doctor Darwin, my son abuses drugs, is kicked out of school, cannot do anything for himself and hurts himself’, the woman says. ‘Bad genes’, concludes Darwin, ‘nothing can be done’. At her wit’s end with the hopelessness of the situation she decides to give it one more try and walks in the door of a third doctor.

The pernicious assumption that a poor development, health and well-being is set in stone, in our genes, has been the driving force behind the development of prenatal screening programs in the United States and abroad for the past few decades.

In 2011, the latest triumph in prenatal testing was introduced: the NIPT (Non Invasive Prenatal Test). This DNA test can, with reasonable accuracy, detect Down syndrome in early pregnancy from a single drop of blood taken from the mother. Hailed by medical professionals as the Holy Grail in prenatal testing, the NIPT has quickly spread across the globe. But, while genetic fetal testing is technologically very advanced, the ideology upon which it is based, is outdated, discriminatory and dangerous to the human species.

Genetic testing claims to predict the future and quality of life based on genetic knowledge alone. In doing so it underestimates factors like lifestyle, education, inclusion, and love, in achieving a healthy, rewarding life.

Angela Bachiller is a counselor in a Spanish town.

Tim Harris is a restaurant owner.

Garrett Holeve is an MMA fighter.

Pablo Pineda is an Actor, who also holds a diploma in Teaching and a BA in Educational psychology.

Angela, Tim, Garrett and Pablo also have Down syndrome. They were able to become the persons they are today, because they were given a chance, included, educated, and their lives celebrated.

In the sixties many children with Down syndrome and other disabilities were housed in institutions. It was assumed that all their problems were caused by their DNA.  Many grew up to become dependent adults with poor health and a short life-expectancy.  Today we know the truth that these children were limited by low expectations of others, a serious lack of medical care, education and cruel segregation from their families and society.

This over reliance on genetic factors alone prejudices other important opportunities.  Rejection by schools without looking at the individual, unfair disadvantages from insurance companies, again segregation and simply not getting a chance.  In its most radical form it deprives unborn babies of life:

 “the United Kingdom National Down Syndrome Cytogenetic Register (NDSCR) reports that in 2012 92% of women with a positive prenatal diagnosis terminated the pregnancy. Similar numbers prevail in the US.”

This is not healthcare.  That is not progress. That is an outright denial of the advances made by people with Down syndrome.  This is discrimination in its most extreme form.

The debate about whether ‘nurture’ or ‘nature’ is more important has not, even after a century of inquiry, lead to a definitive answer.  Now, Epigenetics, the new kid on the science-block is dissolving the imaginary line between the two.  Epigenetics is scientifically proving neither is more important: human development and our physical, mental and spiritual well-being is largely the result of a complex interaction between our genes and our environment, the biosphere.

Our development, health and spiritual well-being is largely affected by the choices we make.  Humans change the expression of most of their genes by diet, exercise, and their social and spiritual life.

Science is asserting what Angela, Tim, Garrett and Pablo and billions of other people are doing daily: changing the course of their lives for the better by making better choices.

So if making better choices affects our live for the better, poor choices do the opposite. Geneticists, to their surprise, are finding epigenetic change can be passed down from parent to child, one generation after the next.  Poor choices such as dumping large quantities of toxins in our environment will, therefore, cause adverse epigenetic change. Research and surveillance agencies worldwide are reporting an “increasing occurrence of congenital disorders that lead to mental retardation or dysfunctioning body organs”. Hawaiians spike in birth defects are linked to the intensified use of pesticides in genetically modified crops.

The choice is stark.  Are we simply going to let industry and governments unjustifiably screen out all babies with identifiable differences from our communities? Or are we going to advocate for a sustainable future which is clean, tolerant and inclusive? A future that respects the individual but sees and prepares for the big picture in the biosphere we all live in, and are treating as expendable.

I have two daughters with Down syndrome.  Their lives are not defined by the presence of an extra chromosome.  Sure the road to fluent speech, flawless writing, and coordinated bicycling is often filled with obstacles, but they don’t let it ruin their day, much less their lives. They are consumed with more important stuff like Saturdays’ dance recital or Sundays’ soccer game. Of course, like any kid, mine can drive a mother insane. Hazel can be stubborn as a mule and April can take an hour to get dressed.

My daughters have an uncanny ability to accept their flaws and those of others without judgment and still fully enjoy life. By doing so they spread love, simplicity and joy to the people around them.  That makes my daughters perfect human beings and wonderful company.

People with Down syndrome, as a group, were nominated for the 2014 Public Peace Prize for their ‘real ability to diffuse peace around them’.  These human traits are needed more than ever in today’s fast paced, money and self-centered society.

 The science behind prenatal genetic selection fails to recognize that cutting off a portion of our human species that we consider ‘less worthy’ will alter the humanity of the species that live on.

With the imminent onset of tests that efficiently and affordably analyzes the whole genome of an unborn baby, fetal genetic testing should concern us all. It is the beginning of something we don’t know the ending of. If this technique, leads to acceptance of genetic screening and selection for Down syndrome, you don’t have to read sci-fi books to know more human species will be singled out for selection in the future. Who will be next? People with lower IQ’s, a different sexual preference or psychological predisposition, your off-spring?

Oh and by the way that woman and her son came out of the third doctors’ office an hour later with a new lease on life. The son gave up drugs, went back to school and is now the chef and owner of a restaurant serving the finest, organic foods. His mother manages the waiting staff.

About the author: Renate Lindeman is a Mother of two children with Down syndrome, Writer, Disability activist, A representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

By Renate Lindeman

Fact: Screening negatively affects the lives of people currently living with Down syndrome.

Down syndrome is the focus of prenatal screening and selection programs worldwide. Down syndrome is also the least funded major genetic condition by the National Institutes of Health (NIH) despite being the most frequent chromosomal disorder. The two correlate and helps to shift funding and academic interest from research and development of treatment and programs aimed at improving lives of people with Down syndrome to screening aimed at preventing the birth of people with Down syndrome.

Even though Down syndrome does not cause inhumane suffering  (Myth 1), prenatal screening and selection won’t lead women to a greater reproductive freedom (debunked Myth 2) but instead increases pressure upon them, the prenatal genetic screening business is in full swing. What is driving this new genetic technology? Why did it so rapidly become the new ‘norm’ in routine prenatal healthcare globally?

The answer is simple: money.

In 2014 Belgian media reported, in a series of articles, on the plan by the Belgian Minister of Health to implement the NIPS (non invasive prenatal screening) as part of the publicly funded national screening program making it available to all pregnant women. Other countries (UK, The Netherlands, etc.) are considering similar scenarios.

Possibly an extra $630,000 is spend by public funded healthcare per prenatally diagnosed child with Down syndrome

Down syndrome, as the most common chromosomal variation, occurs approximately in 1 in 700 pregnancies. The costs of NIPS vary per country and region, but for calculation purposes an average of $900 per test is used, which means some governments are considering to fork out an extra $630,00 (700 times $900) per diagnosed child with Down syndrome to enable selection. In Belgium approximately 65,000 children are born yearly. If all these women choose screening, extra costs for the Belgian government amounts to nearly $60 million. Every year.

Besides having moral, social and ethical objections to this, from an economical perspective, is money spent wisely? A study from Norway finds a link between abortion and subsequent depression). According to Sølvi Marie Risøy, a researcher at the University of Bergen, selective abortion can “bring women at the limit of what a person can bear”.

This is not in the best interest of women nor something that usually comes up during counseling. Treatment for these women, loss of income, will greatly add to the long-term costs for society. If these millions would be invested in programs aimed at helping people with genetic differences (like Down syndrome) and their families, this would benefit everyone in society. Think of inclusive education for children with learning disabilities or creating more job and housing opportunities for adults.

In Asia, Europe and the Americas combined there are over a hundred million pregnancies yearly.  With an average cost of $900 per test, potential profits for the pharmaceutical industry developing dna-tests are huge:

“Looking forward, the market for prenatal and newborn genetic testing is projected to be worth USD 8.37 billion by the end of 2019, growing at a compounded annual growth rate (CAGR) of 26.9%.”

(For the latest news on revenues, shares and other financial tidbits on tests check out #NIPT).

Pharmaceutical industry slickly markets ‘peace of mind’ to expectant parents to sell their product and maximize profits. It is not surprising they have managed to distort a test aimed at eliminating a portion of society into a promise of life in ‘Harmony’. I can see expecting parents –only wanting the best for their child- swallowing the false promise of a perfect life based only on genetic information.

What I don’t understand is that so-called medical ‘experts’ and governments are so willing to pour millions into genetic screening programs that offer no health benefits but target people who are perfectly happy with their lives under the false pretence of ‘public health’.

We have to resist the fear that is cultivated by medical professionals, politicians and the pharmaceutical industry, to give birth to an ‘imperfect’ child. Down syndrome is not a ‘scary condition’ that causes suffering. The real danger are voices that claim our children need to be tested before we can decide ‘to start life’. It lies in a society that ‘cares’ less and exerts more pressure in our wombs.

Screening and selection doesn’t say anything about life with Down syndrome. It says everything about the society that we are.

About the author: Renate Lindeman is a Mother of two children with Down syndrome, Writer, Disability activist, A representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

By Renate Lindeman, the spokesperson for Dutch parent group Downpride’

Yesterday, the picture of a young boy with Down syndrome, tethered to his bed, went viral on the internet. The picture above was taken in 2006 during MDRI’s investigation of Serbian institutions. In 2007 when the investigation was made public he was moved to a Serbian foster home.

When this picture first emerged on the internet in February 2015 the following comment was made: “Although the picture above is haunting, please know the child is living with and well loved by a family in the US. He also has continued contact with his birth family. Reece’s Rainbow*) was involved in the adoption.”

Besides the much read and liked comments like ‘sad’ and ‘heartbreaking’, that were left yesterday someone questioned: ‘how could parents do this to their own flesh and blood’?

In Eastern Europe – and many other places in the world – parents do this ‘to their own flesh and blood’ because the birth of a child with a disability is cause for disappointment. When their child is born there are no congratulations and the doctor and nurses will tell parents that their child will never achieve anything meaningful. That their child will drag them down financially. That this child will ruin their and their families lives. That they will never be able to give their child the proper care so they better hand it over to authorities, who know what is best for all involved. Parents, trusting the experts, who often deal with similar situations, hand over their newborns to the States’ care. The child often ends up abandoned in some (mental) institution thousands of miles away from the home of his birth parents.

In Western society we are much more civilized and screening programs are offered to ‘detect anomalies’ as routine part of prenatal healthcare. If a child is diagnosed with a disability such as Down syndrome, there are no congratulations and the doctor and nurses will tell the parents that their child will probably never achieve anything meaningful. That their child will drag them down financially. That this child may ruin their and their families lives. That they may never be able to give their child the proper care so they better consider……………the option to terminate pregnancy.

Many parents, trusting the experts, who often deal with similar situations, decide over the future of their unborn child and abort. Termination rates after Down syndrome is diagnosed vary from 67% in the US to 92% in Europe.

And just because we do not have pictures like the one shown above, doesn’t make it a lesser injustice. Eliminating people with disabilities from our lives, either before or after birth, stems from the inability to view disabled children as equally human. The effect on society remains the same.

Children should not be placed in institutions because they have a disability. Unborn children should not be exterminated because they have a disability. That doesn’t say anything about the inherent worth of these children. It says everything about the society we live in.

Children with disabilities are just like – well – children: they need love, a home, school, inclusion, friends, apple-pie. And if they are given that, these children with disabilities will thrive just like –well- children. They will achieve something meaningful and they will enrich your life and that of your family. They will be loved and they will love you. Don’t just take my word for it. Take the words of millions of parents of children with disabilities around the world.

I hope that this little boys’ picture will aide in achieving awareness that children with disabilities belong in society, as well as question authorities’ ability to know what’s best for families.

#prenatalselectionhurts

*) Reece’s Rainbow has helped numerous institutionalized children find their ‘forever’ family. Many of their stories start like the one of the little boy shown in the picture and continue as children living happy, healthy and full lives with their adoption family.

Following a baby’s Down syndrome diagnosis, it is clear what parents need and what they don’t. Parents do need accurate information and support. Parents do not need outdated misconceptions, pity, scare tactics, or completely incorrect information. All too often, the latter is all that new parents receive.

In connection with the mission of Saving Down syndrome, we as an organization now provide support for expectant and new parents in a safe, private group on facebook. The group is comprised of parents and grandparents of people with Down syndrome who are available to answer questions, share knowledge, provide resources, and be a sounding board for new members.

The benefit of Saving Down syndrome’s sponsorship is that group members are from around the globe. If a new parent is awake feeding baby in the middle of the night and has a question, there will be group members present and available.

The group description on facebook is as follows: This group is for expectant and new parents who received a diagnosis that their baby has Down syndrome. We are aligned with the Saving Down syndrome Facebook page. There are many people in this group that have been there, have a child with Down syndrome, or have an interest that can be of great service. We are here to offer support, educate on Down syndrome, guide new parents through the process of being pregnant and having a baby with Down syndrome. Feel free to invite parents to the group and keep it respectful. Welcome to the Down syndrome community & Team 21!

We welcome and encourage you to invite friends who might be interested in joining the group. Any person who wants to take part just needs to click this link: https://www.facebook.com/groups/368504810003901/, then ask to join the group. We look forward to widening our newest Saving Down syndrome community.

She describes very thoughtfully how she went through the “devastating” process, “living the nightmare” of a possibility that her child might have Down syndrome, and came to realization that all children are perfect gifts. I appreciated her honesty and I found her path to acceptance beautiful.

The comments, however, had that vibe… that must have been horrible, so glad you have a happy ending, so glad your child will be perfect.

On a Down syndrome pregnancy message board I frequent, this is something that comes up a lot. People will write that they are devastated and scared because of a marker on ultrasound or elevated levels on their blood tests. We all respond with encouraging stories about how much we love our kids with Down syndrome and how much joy they bring to our lives. Then a few weeks later when the NIPT comes back negative–no Down syndrome–their report is often something like this: thank God my child is normal! the results came back, my baby is healthy! thanks for helping me with my horrible nightmare, but my baby is just fine! See ya never!

I do get it, and a few times I have been the friend who comforts another on undesirable test results. One happened when a friend and I were both pregnant for the first time. You hear the news, your face becomes somber, and you think about how awful it must be for them. Of course, my response was different after Kyle was born. I remember telling one friend my thought that, “if only all parents could be so lucky to have a child with Down syndrome.”

So maybe we can stop thinking that a positive prenatal indication of Down syndrome is the end of the world? How about instead of getting that somber, sympathetic face and feeling sorry for our poor friends, we change our way of thinking? How about when we hear someone has a prenatal indication of Down syndrome, we think about the parents we know who have a child with Down syndrome and the joy they experience. If you don’t know one, you’re reading this, so you can take my word for it:

Our kids are gifts, our kids our important members of our families, our kids have bright futures, our kids have amazing abilities, our kids change our perspectives, and our kids teach us how to enjoy life.

I am talking about Down syndrome, but I am also not. Read the above sentence again. It goes for a baby with or without Down syndrome. And just like that blogger realized, our kids are perfect gifts, no matter what.

This post originally appeared on for Elysium.