NSW Genetic Health Guidelines - Appendix 2: Sample materials

Sample points for inclusion in a privacy leaflet

The following paragraphs related to the disclosure of genetic information could be included in privacy leaflets of health organisations in the private sector. 

Privacy leaflet

This leaflet is about privacy, your personal information and our organisation.

Your personal information is protected by law

Our organisation handles your personal information, including your health information, in accordance with the Health Records and Information Privacy Act 2002 (NSW). The Health Records and Information Privacy Act 2002 (NSW) has rules about how your personal information is handled, including how it is given to others. There are special rules for health information. Generally, information about you and your health, such as test results and diagnoses, is confidential and will not be given to anyone else without your consent. 

Disclosing personal information without consent

Sometimes, in special circumstances, your personal information must be given to someone else even if you do not consent. For example:

• a court may issue a subpoena requiring that we release this information to assist in resolving an investigation or a court case; or
• you might be diagnosed with a condition, such as a serious infection, that is an immediate threat to other members of the community.

In circumstances like this, we are required by law to release personal information about you. In such a situation, we will continue to provide you with ongoing care.

It may be important to share personal information with relatives

There is another situation in which personal information about you may be given to others.

People can develop a familial disease. A familial disease is one that can be inherited from one or both parents. Other people in your family may be affected, or this may be the first time that this disease has been diagnosed in your family. Being told that you have a familial disease is clearly very important for you as the affected person. This diagnosis is also very important for your genetic relatives because they may develop the disease in the future.

If you are diagnosed with a familial disease, we may recommend that you tell your relatives so that they can take action to reduce the risk, severity, or impact of the disease to themselves and their families.

Most people are willing to do this because it helps their relatives. 

The law may allow your doctor to give some information to relatives

Sometimes, a patient may, for some reason, not want to tell relatives about the diagnosis, even though treatment and other help and support are available.

When this happens, privacy laws allow a doctor to inform genetic relatives that there is a genetic condition in the family without the patient’s consent for this disclosure. This can only happen if the particular disease poses a serious threat to relatives and the information will be effective and necessary to prevent or lessen harm. The relatives would not be told what the genetic disease is or who in the family was found to have the disease. They would be advised to seek advice from a doctor.

If we decide to give information to your relatives, we will again advise you about the privacy law that allows this disclosure. Your ongoing care will not be affected by your decision.

Do you have any questions?

We would be pleased to give you further information and to answer any questions you may have. Please contact us.

STATEMENT OF ACKNOWLEDGEMENT

In signing this form, I confirm that:

I (patient/authorised representative) have discussed the diagnosis of _____________ with my doctor, and

• understand that this condition is inherited and that my genetic relatives are at increased risk of developing this serious condition
• have been advised to disclose this information to my genetic family
• have been allowed time to discuss and ask questions about disclosing this information, and have been offered the opportunity to seek another medical opinion and genetic counselling
• give consent to have information regarding this diagnosis disclosed by my doctor to my genetic relatives.

OR

I (patient/authorised representative) do not give consent to have information regarding the diagnosis of a genetic disorder in my family disclosed by my doctor to my genetic relatives. I understand that disclosure without my consent may be allowed under the NSW privacy legislation, and that my identity would not be disclosed under this provision.

• I understand that any decision I make will not affect the care provided to me by my doctor.

PATIENT OR AUTHORISED REPRESENTATIVE

Name:           

Signature:

DOCTOR

Name:

Signature:

FORM LETTER TO RELATIVE

It is suggested that this letter be marked “private and confidential”.

 

Dear

Recently a genetic (blood) relative of yours was diagnosed with an inherited condition. This may mean that you and your genetic relatives (brothers and sisters and your children and other relatives) could also inherit this condition. Perhaps you are already aware of an inherited disease in the family.

While we want to respect your relative’s right to privacy, the condition has been judged to be serious enough for you to be contacted. In certain circumstances, the Health Records and Information Privacy Act 2002 (NSW) allows for this information to be passed to genetic relatives like yourself.

This letter is not intended to create distress. Many inherited conditions can be treated and any symptoms lessened.

This letter does not give you any details of this disease, but allows you to decide for yourself whether you wish to have more information. If you do, I would be pleased to provide you with more details.Any information you give me will be treated confidentially. Please note that I cannot give you any information about other family members.

If you choose to make an inquiry, you are not committed to do anything more than receive more detailed information. Genetic testing can be done for some inherited conditions but that would only take place after allowing time to consider the full implications for you, at your request and with your consent.

Please take this letter to your GP if you would like him or her to make contact with me on your behalf. Or you may want to call the contact number listed below to arrange a meeting. Other genetic relatives may also wish to attend, or they can make individual appointments.

Appointments can be organised for discussions with suitable specialists and/or a genetic counsellor. If you live in remote or rural Australia, your GP or health worker is best placed to contact experts to advise and assist, and offer counselling if you would like more information.

It is important for us to know that you have received this letter. Even though you may not want to act on this information, please acknowledge receipt by telephoning the number below or returning the enclosed acknowledgement slip in the stamped addressed envelope provided.

I urge you to take this matter seriously as this information could be very important for the health of you and your close relatives.

Yours sincerely,

Disclosing Health Practitioner