know
yourrights
a guide for parents
Finding out your child has intersex traits (sometimes
called Differences of Sex Development or DSD) can be a
confusing and overwhelming experience. We
understand that as a parent, you want to do your best
to ensure that your child has the care and support thatwill enable them to grow up happy and healthy.
We also understand that you want to make sure yourchild is receiving the best care possible. While theweight of this responsibility may be heavy, knowing
your rights can lighten your load.
This pamphlet is designed to give you a clear perspectiveon what rights you have while advocating for your child.

Rights In General
YOU HAVE THE RIGHT…
TO RECEIVE considerate, respectful, and compassionate care regardless of your or your child’sage, gender, race, national origin, religion, medical condition, or disabilities;
TO BE TREATED as a partner in making decisions about your child’s care;

Right to Privacy

TO CONSIDERATION for your personal beliefs and values;
TO RESPONSES to your requests, needs, and concerns;
TO REQUEST a language interpreter if necessary;
TO ASK for protective and advocacy services in cases of abuse or neglect.

Right to Informed Consent
YOU HAVE THE RIGHT…
TO INFORMATION that is complete and understandable;
TO BE TOLD about the specific nature of your child’s condition;
TO BE TOLD why your doctor is recommending a specific treatment;
TO BE TOLD of evidence supporting the recommended treatment;
TO BE TOLD of evidence not supporting the recommendedtreatment;
TO RECEIVE information about the possible risks and benefits
resulting from the recommended treatment;

YOU HAVE THE RIGHT…
TO FULL CONSIDERATION of privacy and confidentiality in care discussions, examinations, and treatments;
TO EXPECT that your child’s condition should not be the subject of gossip and will only be discussed when necessary for treatment;
TO ACCOMPANY your child during examinations;TO KNOW of the psychological consequences unnecessary exams may
have on your child;
TO ONLY ALLOW exams of your child that are necessary for treatment;
TO LIMIT persons present during examinations to only those individuals
necessary for treatment;
TO SEE OR GET A COPY of your child’s medical records and have theinformation explained to you.

TO BE TOLD about possible alternative treatments, including
non-treatment;

The privacy of your child’s medical records is protected by a federal law,the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

TO RECEIVE information about the risks and benefits resulting
from possible alternative forms of treatment and non-treatment;

You may have additional rights protected by state law,
professional guidelines, or regulatory agencies.

TO MAKE decisions free from coercion and pressure;
TO HAVE adequate time to make your decisions;
TO BE INFORMED if your child’s doctor is considering yourchild as part of a medical research program;
TO DECLINE to participate in or withdraw from a research
project without fear that your child’s care will be compromised;
TO REFUSE treatment that is not in the best interest of yourchild.

knowthat you
you feel that your rights or yourhave options Ifchild’s
rights have not been respected,
you can:• Speak to your child’s doctor or nurse;• Request a consultation with a patientadvocate or ethics committee;
Requesta different doctor;•• File a grievance with the hospital orwith state or federal regulatory agencies;• Contact interACT for more information:
info@interactadvocates.org

This pamphlet offers general information only andis not intended to provide guidance or legal advice
regarding anyone’s specific situation. Please bearin mind that this is an evolving area of law in which
there is bound to be uncertainty. Do not rely on thisinformation without consulting an attorney or theappropriate agency.

interACT uses innovative legal and other strategies to advocate forthe human rights of children born with intersex traits.
interACT believes that the law, properly used, is a tool for achieving
justice; and that justice, properly understood, has compassion at its
heart.
Legal advocates have always played an important role in protecting
the most vulnerable members of society, such as children born withintersex traits or variations of sex development.

365 Boston Post Road, #163 Sudbury, MA 01776(707)793-1190 | interACTadvocates.org