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Draft Ethical guidelines on the use of assisted reproductive technology in clinical practice and research submission

ID: 
68
Personal Details
First Name: 
Zoe
Last Name: 
Wheeler
Comment on specific Sections, clauses or sentences of the draft revised Draft Ethical guidelines
Specific Comments: 
5.13

"Working in collaboration with relevant professional organisations, clinics should use forums for public information to encourage people who were gamete donors before the introduction of the 2004 edition of these Ethical Guidelines, and those born from these donated gametes, to consider contacting the clinic and registering their consent for the release of information about themselves (as outlined in paragraphs 4.2.3 and 5.8) to persons born from the donated gametes or genetic siblings and half-siblings, respectively"

The lack of understanding, lack of search expertise and an inability to leverage organisations with search expertise, has resulted in many adult donor conceived (DC) people being 'knocked back' when they seek to apply for information. Clinic staff are often unsure who the right person to speak with is, or are very negative in their attitude, and are not helpful in activley encouraging donor/offspring connections. This results in individuals feeling like their enquiries are not being taken seriously or they are discouraged from asking again. There is a clear lack of consistency and clinics often provide DC individuals with differing information when they are approached more than once for information. In Victoria VARTA is known as an organisation that will assist people in locating records, however NSW has no central body that a donor conceived person can rely upon to help assist them in requesting information. To overcome this failure I strongly feel that the Government must fund an equivalent organisation or agency (such as the Benevolent Society/PARCS) who has expertise in areas of tracking down records and linking of offspring and genetic parents and can provide specialist search services. 

9.2

I strongly support the following statement - "Information about all parties involved in a donor conception program must be kept indefinitely, in a way that is secure but is accessible to any relevant party (see paragraphs 4.2.3, 5.7 and 5.8)", however for donor conceived individuals born before 2004, many of whom struggle to gain access to their records, the following issues must be addressed on a national level:

  • The right to access information by all donor-conceived people, regardless of state they were born in or year they were born.
  • Locating and verifying records to add to a national Central Register
  • DNA testing to remove doubt on matches and for people whose records have been destroyed

Donor Registers and Records

On the issue of records that are held by individuals or organisations that are not current Accredited Assisted Reproductive Treatment clinics I strongly support the view from the Victorian discussion paper “A right to know your identity: Giving donor-conceived people the right to access information identifying their donor”, that "any person in possession of records to give them to the Central Register when requested to do so by the Authority and in the context of an application for information.” On the issue of compliance with such requests, I propose that it be explicitly stated that it is an offence to alter or destroy donor treatment records, and an offence to be non-compliant with a request to provide donor treatment records to the Authority. For those individuals whose records have been destroyed I recommend specifically assisting them via providing access to a DNA database and actively encouraging and advertsiing the existance of such a database.

 

General Comments
General Comments: 

I believe this document could further outline the rights and responsibilities to DC individuals born prior to 2004. I strongly support the changes to the Victorian legislation regarding access to information for all donor conceived individuals (retrospective access to information) and the implementation of this nation-wide. This process has been in place for adoptees in recognition of their right to know their genetic origins and many comparisons are relevant for DC individuals.

There is a clear need for:

  • A national campaign to encourage past donors to register their details on a central national register and enable DC indviduals to find out information on their genetic origins.
  • A service model encompassing search, information, donor linking and counselling services provision
  • Clear information on disclosure and contact processes - e.g. if both parties wish to exchange contact details then this is complied with.

Contact Preferences and Vetoes

Once a right to information has been established it is important to avoid a situation of a break-down in communication between the various parties and the Authority over contact preferences. The legislation needs to explicitly state that the Authority must notify a person who has made an application for information that is subject to a contact preference if there is a variation to that contact preference, for example if a donor withdraws a contact veto that is preventing a donor-conceived person from making contact. It is also recommended that the Government build in a review process to assess the level of utilisation and the efficacy of contact vetoes after e.g. 3-5 years of implementation. Some Australian states that initially legislated for contact vetoes in adoption legislation (e.g. NSW) have found that they are rarely used in practise and have subsequently decided to remove them from legislation.

Page reviewed: 20 April, 2017