Empowering Informed Consumers of Genetics Technologies and Services

By Terry, Sharon; Davidson, Mary | The Exceptional Parent, November 2000 | Go to article overview

Empowering Informed Consumers of Genetics Technologies and Services


Terry, Sharon, Davidson, Mary, The Exceptional Parent


The Genetic Alliance: "Clear, up-to-date, and culturally sensitive information enables families and their healthcare providers to make meaningful and appropriate decisions."

We stand at the brink of a new age brought about by fast-emerging genetics discoveries. The intense hype and fragile hope of this age plays to an eager, but vulnerable audience. Over coffee in our kitchens and listening to the evening news in our living rooms, we struggle to make sense out of all of this. The translation of new research to healthcare and the fight to ensure access will require all our thoughtful and informed reflection and concentrated energy.

As we live the day-to-day experience of parenting exceptional children, we are keenly aware of the changes in the world around us. Does the increase in genetics information mean new treatments or services for our children? How real are these new discoveries?

The apparent promise of genetics--new services and technologies--encourages us to hope and work in new ways. We need high quality, accessible information, the crux of making informed decisions about treatments and services.

Advocating for children, adults, and families, the Genetic Alliance is the largest international genetics coalition encompassing both consumer (individuals with genetic conditions, their family members, and caregivers) and health professional organizations. These groups work together at the Alliance to enhance the lives of those impacted by genetics. Serving over 300 lay advocacy groups, the Alliance gives voice to millions of people living with genetic disorders, both common and rare.

Emerging genetics

We read about completion of the human genome sequencing and the surge in availability of genetic tests. The role of parents is shifting along with these revolutionary changes. With accelerating advances in genetics, we must sort out the meanings and long-range implications of the discoveries by finding relevant information. Access to quality information, expert counsel, and compassionate support can significantly mitigate the impact of a diagnosis, empower people to take appropriate action and, ultimately, help realize the promise of genetics knowledge to prevent disease and promote health and quality of life.

The Genetic Alliance is committed to designing and implementing innovative strategies to empower consumers and lay advocacy organizations to meet escalating demands for understandable, accurate, and up-to-date genetics information resources. Newly acquired genetics understanding is shifting the public's scientific worldview and role expectations as healthcare consumers.

Ultimately the promise of genetics services is to improve healthcare. But in this time of transition, while many of the technologies are still largely theoretical, informed community dialogue is the first step toward advancing genetics research and applications to improved healthcare. Genetics organizations, both public and private, must collaborate to produce culturally competent, community-based resources. The Genetic Alliance offers clear and credible information to individuals and families and their healthcare providers. At the same time, the Alliance provides a needed forum for community dialogue and empowerment.

The objectives

The Alliance advances these objectives:

* All ethnocultural, disease, and disability communities should collaborate in dialogue, discussions, and consensus-building solutions to challenges posed by genetics.

* Consumers, health professionals, and industry leaders should participate in public policy decision-making.

* Communities should make informed and autonomous decisions about utilization of genetic services and technologies.

* Healthcare professionals should understand the unique needs and resources of individuals and families who live with genetic conditions.

* Lay advocacy groups should receive the technical assistance essential to evolving into mature, informed, and effective support, advocacy, and research organizations. …

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