AAKSIS is aware that mere registration on the website, membership in the organization. or membership as a contributor to Friends of AAKSIS implies either a genetic anomaly or a close relationship to people or persons who have such an anomaly.
The recording of names, addresses, phone numbers, e-mail addresses, karyotype information, and dates of birth or diagnosis is done to provide the registrant with newsletters, brochures, announcements, and other information related to Klinefelter Syndrome. Information is kept confidential.
No directory will be published nor will the registration information ever be sold or provided to an outside party. Basic information of site registrants is periodically reviewed by AAKSIS Board members to determine the characteristics of our audience by age and relationship to XXY individuals for site modification.
AAKSIS supports scientific research into the causes and medical and developmental complications of XXY.
Should our organization be approached regarding providing subject names for a scientific survey or study, the proposal will first be studied and then approved by the AAKSIS professional advisory board.
Once approval is given, AAKSIS will directly notify appropriate registrants of the possible participation. The subject may then decide whether or not to participate.
One should never assume that someone identifying him/herself as a "researcher" has the approval of AAKSIS or is conducting valid research.
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