Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 2 , Issue 1 Date: Winter, 2002 Topic: Genetics:
Scientific Advances...Human Choices

Introduction to Genetics: Scientific Advances...Human Choices

by Ann Smith, MSN, RN, CDDN

“Honest disagreement is often a good sign of progress.”
-Mahatma Gandi

Scientific advances in the field of Genetics are being published and debated almost daily in scientific literature as well as in newspapers worldwide. “There is so much that can be done, but should it be done?” That statement, which was made by Sam Rhine when he presented a “Glimpse at the Future” at a recent Genetics conference, sets the tone for this journal issue. Revolutionary scientific changes and their effect on choices are themes that resonate throughout the thought provoking articles that were contributed by persons with genetic disorders, family members and professionals. In the field of Genetics, there have been profound scientific advances that have led to the need to explore all the challenging issues; including informed, meaningful choices that will need to be made by persons directly affected, health care professionals and public policy makers.

If progress is to be made to improve the quality of life of persons with developmental disabilities, we must not only celebrate these revolutionary changes, but we must also ponder the impact these scientific advances will have. Controversial issues are not always welcome topics of discussion, but there must be a dialogue among all involved parties. How do leaders in the field of Developmental Disabilities respond to the scientific advances and controversial issues? We must remain open-minded when learning about the revolutionary changes and be prepared to listen and respect various viewpoints related to scientific advances. We need to listen to persons with genetic disorders and their families, who have proven to be leaders in this area – they are the ones who have been personally involved with challenging issues and can provide insight as to how and why we should move forward.

When we think about some of the issues that need to be addressed, the following questions emerge: What are the scientific advances that have been made in the field of Genetics and what are the ethical implications? What is it like to be diagnosed with a genetic condition? How does the family go through the diagnostic process and were professionals helpful in this process? Should genetic testing be done and what impact does that decision have on immediate family members as well as future generations? What about genetic discrimination? What does all this mean to persons who have developmental disabilities – how do various people perceive preventive and therapeutic measures – are they met with joy or a sense of feeling “devalued”? Considering diverse viewpoints, and religious and cultural backgrounds, how can professionals provide support to families who are affected by all these issues?

Throughout my nursing career, I have been fortunate to have learned so much from families who were affected by genetic disorders and the team of collaborating professionals. Working with the contributors to this journal issue has been even more enlightening as the authors shared their stories to be the voice for so many others who are affected by genetic concerns. This issue on “Genetics: Scientific Advances……Human Choices” gives us the opportunity to explore the questions that have been raised earlier by listening to families and other writers tell their story and their involvement from various perspectives. These international leaders in the field of Genetics have only touched upon the “tip of the iceberg,” leaving this topic open to a challenging dialogue. I would like to extend my deepest thanks and appreciation to all the contributors for setting the stage for thought provoking deliberation.

When you read these articles you may either agree or disagree with the presented information, which may raise a host of additional questions. We invite people across the world to explore the various points of view and global effects as you travel along the inevitable journey of progress in the field of Genetics. We must give serious thought to how our powerful scientific knowledge can be used to enhance the lives of persons with developmental disabilities as well as how to prevent its misuse. We invite you to critically reflect upon what was presented, to discuss and debate the various issues, to respond on-line to the information that has been presented, and to become involved in various roles that include support, advocacy and public policy making. Great things are happening, but as stated by Sir Winston Churchill, “The price of greatness is responsibility.”

Photo of Ann SmithAnn Smith MSN, RN, CDDN has had over thirty years experience in the field of Developmental Disabilities Nursing and was among the first group of nurses to receive certification as a Certified Developmental Disabilities Nurse (CDDN). Her experience covers the life span of individuals with developmental disabilities in a variety of settings. For eighteen years she was the Director of Health Services at the Evergreen Center in Milford, Massachusetts and continues to work there part time as Health Services Advisor. As a Developmental Disabilities Health Services Consultant, Ann has been involved in various educational and advocacy roles.

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