ISNA to Participate in Research on Quality of Life Issues, Hormone Disruptor Debate
Intersex Society of North America (ISNA)
INTERSEX SOCIETY OF NORTH AMERICA to Participate in Research on Quality
of Life Issues, Hormone Disruptor Debate
For Immediate Release: September 30, 2003
For additional information, contact the ISNA Office at 206-633-6077.
Seattle - The Intersex Society of North America announced today that it
would begin working in an advisory capacity with university researchers to
develop a research plan for quality of life studies for people with intersex
Board Chair Thea Hillman stated, "This is an important step for us.
For too long, scientists and doctors have studied intersex without the active
and informed involvement of people with intersex. It’s time for those
with the greatest stake—people with intersex—to be able to help
design research that meets our needs."
Intersex activists and health care professionals have long asserted the
lack of useful data about people with intersex conditions, particularly in
regard to treatment. The few studies that have been done have been mainly
focused on “physical correctness” or gender identity as a measure
of surgical success. Largely missing from this research have been questions
about quality of life; sexual function and relationship issues; family dynamics,
especially for children and young adults; and the kinds of psychosocial resources
needed by people with intersex conditions.
In the same statement, ISNA also clarified its role in a project examining
the relationship between hormone (or endocrine) disruptors and intersex conditions.
Monica J. Casper, Ph.D., Executive Director, stated that the point of the
organization's collaboration with Birth Defect Research for Children, Inc.,
was not to engage in original scientific research on the causes of intersex,
but rather to conduct a literature review assessing what is being said and
written in the scientific community and the media about the link between
toxins and intersex conditions.
Casper stated that feedback from the intersex community has been very helpful
in clarifying ISNA's role. She remarked, "In working with BDRC on this
project, we want to be able to take an informed position on scientific developments
that have major implications for people with intersex and their families.
Currently, research on endocrine disruptors is proceeding with zero input
from the intersex community. This project, shaped by our mission to end shame
and secrecy and unwanted surgeries, hopes to remedy that."