FROM THE STACKS
EDITOR’S NOTE: There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!
Facts About Down Syndrome and Prenatal Screening in Iceland
The Icelandic Ministry of Welfare, in 2018, issued the following press release, correcting misleading information concerning the birth of children in Iceland with Down's syndrome:
The Icelandic Ministry of Welfare considers it urgent to present the following facts due to incorrect and misleading information which has repeatedly been spread abroad concerning the birth of children in Iceland with Down's syndrome. Among the misconceptions which have been promoted is the claim that the policy has been adopted by the Icelandic authorities of preventing mothers from giving birth to children with Down's syndrome. These statements are not based on facts, and furthermore makes serious accusations which cannot simply be ignored.
Icelandic Pre-natal Healthcare Services for Mothers
All women in Iceland are offered pre-natal care, including regular health check-ups during pregnancy and post-natal assistance from healthcare professionals. During pregnancy, a number of screenings are offered for clinical problems, to check for anything which could affect the mother's or child's health during pregnancy.
Screening for chromosomal disorders, such as Down's syndrome, is entirely the decision of the prospective mother, who has an unequivocal right to accept or decline screening. In clinical guidelines, emphasis is placed on having healthcare personnel provide the prospective mother/parents with objective information concerning the advantages and disadvantages of screening on which they can base their independent decision.
Clinical guidelines for healthcare personnel on pre-natal care emphasise the importance of enabling every woman to take an informed decision on the service which she receives during pregnancy and it is the responsibility of healthcare personnel to explain clearly and objectively what options a woman has. The woman's decision is always to be respected. Guidelines are based on the understanding that pregnancy is a normal biological process.
Some 15-20% of Women Do Not Want Fetal Screening
On average, 15-20% of women choose not to have screening of the fetus during pregnancy, while 80-85% undergo such screening. Screening only reveals whether there is an increased probability of the fetus having Down's syndrome, and further tests are needed to confirm this. Some 15-20% of women who are informed of the increased probability of Down's syndrome following screening elect to continue the pregnancy and decline further testing in this regard. On average, during the past ten years 2-3 children have been born each year with Down's syndrome in Iceland.
Rights of the Disabled and Respect for Diversity
For many years the Icelandic government has been working on transposing into Icelandic law provisions of the UN Declaration on the Rights of Disabled Persons. In signing the Declaration in 2007, Icelanders obliged themselves to work towards implementing it and it was ratified in Iceland in 2017. Since 2012, this work has followed a specific strategy and action plan for the disabled adopted by the Icelandic parliament Althingi, based on the UN Declaration. The current strategy and action plan in this field covers the period 2017-2021, and was drafted in close consultation with organizations for the disabled. The objectives of the program state, for instance: "It is a core principle of Icelandic society to respect people with disabilities as part of human diversity. The full human rights of disabled persons will be strengthened, protected and ensured on equal terms with others, and conditions created enabling the disabled to live an independent life on their own premises."
(Government of Iceland, 2018)
Taking Inspiration from Art Created by a Patient’s Granddaughter
NIH Director Dr. Monica Bertagnolli in her office with Suzi Grossman’s artwork. Credit: Chia-Chi Charlie Chang, NIH
By Dr. Monica M. Bertagnolli, Director, NIH
I have a specific ritual when moving into a new office, as I did when I became NIH Director in 2023: I hang a very special framed screen print on the wall. This piece of art has followed me through several different offices, representing different positions I have held as a cancer surgeon, researcher, and educator. It’s always the first thing I want to see as I settle into a new workplace. It serves as an inspiration for my work, for what so many of us involved in health care strive to do. I’d like to take this opportunity to tell you the story behind it.
“Seeing this artwork every time I come into my office is a humbling experience for me. To me, this image recognizes the trauma that a surgeon inflicts to counteract the harm that cancer creates.”
Many years ago, in my role as an oncologist and surgeon, I had a very memorable patient, an older woman who had advanced cancer. From the time that I met her, she had incurable disease, so our goal was to make every effort, through multiple surgeries and chemotherapy, to help her continue living a life that she enjoyed for as long as possible. She was very courageous and spirited in her attitude toward her disease; although realistic about her situation, she was determined not to let anything get in her way. She was in my care and remained undaunted for about a decade until she passed away as a result of her disease.
Sometime after that, an unexpected package arrived at my office. It was a screen print created and sent to me by my patient’s granddaughter, an emerging artist in the Boston area. She titled it, “We Are Not What You Have Taken: A Response to Cancer.” It is a very powerful piece of art.
As you can see in the piece, my patient’s granddaughter created an artistic equation. First, she shows us a widely used symbol of a woman. Then, she uses images to represent the many surgeries her grandmother underwent, including a double mastectomy and operations to remove a kidney and a tumor that I remember describing to her as “the size of a football.” She also underwent bowel resection and thyroid surgeries, and another image represents the loss of her hair with chemotherapy. But the product of the equation is the original symbol of a woman, telling us that after all that was taken from her, she was still the same person, with the same indomitable spirit and sense of self she had at the start.
Seeing this artwork every time I come into my office is a humbling experience for me. To me, this image recognizes the trauma that a surgeon inflicts to counteract the harm that cancer creates. People with cancer face incredible challenges and must make many difficult decisions concerning their treatment. As a feature of these decisions, I don’t believe there is anything more profound than the trust a patient puts in their surgeon, allowing the surgeon to perform potentially life-altering operations. This work of art reminds me of the amazing courage of the woman it represents, who trusted in me and was determined not to let the trauma of cancer treatment diminish or define her.
Receiving such a meaningful work of art from a family member is very special for me. It is so challenging for family members to see a loved one going through all it takes to persevere in the face of this kind of disease, but my patient must have conveyed a message of strength and optimism to her granddaughter that led her to create this beautiful artwork.
I am so grateful to my patient’s granddaughter for creating and sharing this gift with me. I know her grandmother would be very proud of her for conveying its inspirational message in such a wonderful, moving way.