genetic support awareness week
news| events
|
Genetic Support Awareness Week 2008
Monday 8th December - Friday 12th December
coinciding with
International Human Rights Day
Wednesday 10th December, 2008
* Special Seminar * Art Of... Awards *
Genetic Support Awareness Week (GSAW) aims to raise awareness of genetic conditions and the Genetic Support Network of Victoria (GSNV), and to celebrate diversity.
Seminar: Genes - Rights, Wrongs and Responsibilities
Our panel of exceptional speakers brought the topic to life, discussing the ethical, moral, clinical and the personal. All speakers had a gift for presenting things so they were easy to understand. Everyone appreciated the speaker’s humour and common sense approaches.
Thanks to our wonderful speakers…
About the Victorian Charter
The evening started with a general overview of human rights and the new Victorian Charter of Human Rights and Responsibilities, by Jason Rostant from the Victorian Equal Opportunity and Human Rights Commission.
Jason explained that the Charter gives advocates a new tool. Where once human rights was about “doing the right thing”, it’s now about following the law.
The Charter came into effect from the 1st January 2008, and all Public Authorities (which may include DHS funded groups) are required to operate in a way that is consistent with the Charter.
Jason took us through general concepts behind the charter, including the four fundamental principles:
- Freedom
- Respect
- Equality
- Dignity
…which together make the acronym Fred. He also explained that having a human rights based approach maximises PANEL among all stakeholders:
- Participation
- Accountability
- Non-discrimination
- Empowerment and
- Linkage to rights.
Genetic Service Provision through the Lens of the Charter
The Director of Genetic Health Services Victoria (GHSV), Professor Agnes Bankier, spoke about genetic service provision in the context of the new Charter and specifically what it means for GHSV. She noted that:
- The joint GSNV and Genetic Health work plan, which is developed and implemented each year, supports advocacy, education and client centred genetic services,
- GHSV is embracing the principles of the Victorian Charter (PANEL) through:
- Participation, e.g. the Client feedback survey,
- Accountability and the various guidelines and legislations with which GHSV must comply,
- Non-discrimination and how GHSV is …
- Empowering people through brochure translation and educating staff to meet the needs of people from culturally and linguistically diverse backgrounds
- Linkage of policies and service delivery to a human rights framework
Protection of Privacy & Reputation
Freedom of Thought, Conscience, Religion and Belief
 David Amor (Genetic Health Services Victoria) used case studies to illustrate the issues surrounding two sections of the Charter; the protection of privacy and reputation, and freedom of thought, conscience, religion and belief.
He highlighted some of the ethical complexities involved in genetic debates, such as how one person’s right to know may violate another person’s right to privacy.
Everyone appreciated Dr Amor’s thoughtful insights into how privacy and personal autonomy is managed in a clinical setting, and how clinicians may try to balance various family members’ sometimes conflicting needs.
He explained that, in the context of genetics, the right to freedom of thought and belief included the freedom to have your own thoughts about genetic testing, genetic test results and reproductive options (such as prenatal diagnosis and PGD). This right includes the right to act in a way that is consistent with your own beliefs.
Dr Amor spoke about the responsibility we have to other people, even when claiming our own individual rights. Sometimes there isn’t an easy answer as the needs of one person conflicts with the needs of another. The needs of each person must be considered and the answer may well be a “best fit”.
A Mum’s Perspective: Freedom of Expression
Maria’s can-do attitude and story of adapting from life as a hairdresser to mum and founder of a charity was inspirational.
Everyone appreciated Maria’s honesty and the way in which she shared her life with us as she spoke about her efforts to maintain the rights of her son, Sammy Joe, and what this has meant for her family.
“Allow freedom of expression by providing inclusive environments”
“The differences that count the most in people’s lives are the little ones.”
“The hardest thing about having a child with a disability is the isolation that you feel even when you are in a crowd…freedom of expression has allowed me to have a strong voice and enabled me to speak out not only for my son but for others like him.”
In advocating for Sammy Joe, Maria has exercised her right to express herself through:
- Starting a support group
- Creating a web journal
- Forming an online network
- Pose questions through the media and through the health system
“Become the blueprint for change. We need to encourage every person to live within the charter.”
Maria challenged us to live with Charter in our daily lives.
Cultural Rights
 Eugenia Georgopoulos charmed the audience as she spoke with humour about her Greek heritage to illustrate different cultural perspectives and values. She noted that culture is defined as the patterns of behaviours, beliefs and values that are shared by a group of people. Culture includes everything from language to superstitions, to moral beliefs and food preferences. She reminded us that Australia and Australians have a culture, even though we may not necessarily be conscious of it.
Human Rights are culturally reflective, rather than universal and can be interpreted differently depending on cultural, ethnic and religious tradition.
Protection from Torture and Cruel, Inhuman or degrading treatment
(Including informed consent for medical treatment)
Associate Professor Lynn Gillum spoke about the ethical aspects of this human right, especially what is informed consent. She noted that:
- a person must not be subjected to medical or scientific experimentation or treatment without his or her full, free and informed consent.
- Informed consent gives you the right to relevant information, given in an understandable way. It also includes the opportunity to ask questions, seek advice or other opinions, and to think it through for yourself.
Protection of the Family and Children up to 18 Years
The Rights of Children
 Moira, fondly referred to at GSNV as “Moira the Lawyer”, gave a short tour of an issue close to her heart; the rights of children.
She reminded us that children have the right to be heard. If a child has a strong view, they have the right to have that view taken into account. Because they are children, they may not necessarily understand the attached consequences. Parents and guardians (and other adults in positions of power over a child) have a responsibility to balance the child’s wishes with the relevant consequences and to make the child aware of the consequences at a level the child can understand.
Parents, teachers, health professionals and all adults in a position of trust have a responsibility to listen to children and ensure that their rights are maintained.
Humane Treatment When Deprived of Liberty
(Rights of the Disabled)
Frank Hall-Bentik is involved with the Victorian Equal Opportunity and Human Rights Commission, the International Human Rights Convention and the Rights for the Disabled. He spoke about the Convention, which was endorsed on Friday 25th August 2006. To date 42 countries have ratified the Convention, with Australia ratifying it on 18th July 2008.
Taking part in Public Life
(Includes using the Charter as an Advocacy Tool)
Carly Myers’ gave real life examples to discuss how the Victorian Charter can be used as an advocacy tool. As always, Carly used a touch of humour to express the difficult, frustrating and even tragic, including:
- The frustrations of buying a small-sized adult shoe that isn’t in a child’s style, and
- How short-statured children were afraid to go to school after a radio station ran a “dwarf throwing competition”
Her strategies for successfully using human rights as an advocacy tool included:
- being informed,
- knowing and understanding your rights,
- asking questions, and
- Knowing who to contact.
She spoke about when you might like to contact…
- Your support group
- The GSNV
- Your local member of Parliament
- Victorian Equal Opportunity & Human Rights Commission
- Disability Services Commissioner and
- Office for Disability
GSNV and Genetic Health are proud to have had such a superb line-up of speakers. We thank all the speakers for their time, effort and expertise.
Genes: Rights, Wrongs & Responsibilities was proudly presented by Genetic Support Network of Victoria (GSNV) and Genetic Health/VCGS.
The Art of… Awards 2008
OVERVIEW OF AWARDS & CATEGORIES
Earlier this year, we invited nominations for people who have made outstanding contributions to the lives of people affected by genetic conditions in the areas of;
- information/education (The Art of Learning),
- support (The Art of Listening),
- and advocacy (The Art of Advocacy,
these being GSNV’s guiding principles.
Congratulations and thank you to everyone nominated for an award...
The Art of Learning (Information/Education)
This award acknowledges professionals in education or the media who exemplify the compassion and caring that is so important in explaining and reporting on genetic conditions. This award heightens awareness of the fine line between education and exploitation, and of the sensitivities that surround writing about people with genetic conditions. It is intended to build awareness of genetic issues by highlighting the responsibility to report fairly and impartially about developments in genetics and the impact of these discoveries on people’s lives.
Nominees:
Louisa Di Pietro
Thalassaemia Society of Victoria &
GSNV Committee Member
I would love to nominate Louisa Di Petro because she has done a lot of work through the Lions Club of Melbourne Markets and also through the Thalassaemia Society. She has helped many individuals and also families and always goes far and beyond what she needs to do in order to educate the community and help those in need.
She has helped many families through the Lions Club and through her own personal experiences. She volunteers so much of her own time to help others by calling them, helping them with their organisations and also just raising awareness in all Genetic conditions. She is truly a remarkable individual and a beautiful soul brought to this earth for a purpose; the purpose to teach others to give and be kind to one another, no matter how hard the struggle there is always an answer.
She influences people with her kindness and she just is a beacon of light, knowledge and wisdom. She gives her self wholly to every situation. I don’t know how she finds any time for herself. She definitely is the most selfless person I have ever met. She thinks only of good even amongst her own struggles with her own condition; she rises above it all.
Nominated by Maria Liistro
Tony Jackson
Naturform
Tony Jackson from Naturform dedicates his time looking after families within the community. What he has done for the Pavilion, his contribution to help raise awareness about Genetic illnesses by calling people within the building trade and making them aware of trichothiodystrophy, xerodermapigmentosum and Cockayne syndrome. He has a wonderful big heart, is warm, caring and very giving.
Nominated by Maria Liistro
Dr David Amor
Clinical Geneticist
Genetic Health Services Victoria
David Amor is a wonderful doctor that was assertive enough to recognize that Sammy-Joe had TTD just by looking at him. If he didn't walk into the room the time I was losing it with the Genetic Department, Sammy-Joe would still be undiagnosed. His talent to just identify this very rare illness needs to be recognized. He also has been wonderful enough to help raise awareness at the schools about Genetic conditions. He was also willing to be on TV to raise awareness on this Genetic condition.
Nominated by Maria Liistro
Carly Myers
Immediate-Past President, GSNV
Has anyone thought to nominate Carly ,she has done a wonderful job for GSNV
Nominated by Maria Liistro
…Carly has been involved in community education through her work at Arts Access. She has also been involved with a number of GSNV seminars in the past 12 months including:
- guest speaker at last year’s Awareness Week
- guest speaker at last year’s Awareness Week
- guest speaker at Genetic Counselling student’s seminar
The Art of Listening (Support)
This award focuses on the importance of caring, receptive professionals in the lives of individuals and families living with genetic conditions, and increases awareness of listening as an invaluable key to understanding and helping. This award celebrates healthcare providers who take the time to listen and understand, thus profoundly easing the difficult, often frustrating journey faced by families dealing with the uncertainties and ambiguities of a genetic diagnosis.
Nominees…
Dr Sally Hanson, GP
Dear Panel,
I nominate my GP Dr Sally Hanson for ‘Art of Listening (Support)’ award in appreciation of her work in caring for me as a young person with a genetic condition. I recognise her work in both being part of and helping me to create my own health care team in the adult system. I appreciate her ability to care for me as a whole person and see her as insightful, gentle, caring and professional in her work.
I appreciate how she listens and thinks about me as a person and what may be most benefit for me. I have the convenience of one of her clinics being located within the TAFE that I was attending initially. This meant that there were many other young people that attended the clinic. This fact alone has made good primary health care accessible to me and has greatly helped me in both my journey with a genetic condition and the road to independence and adult health care.
Many thanks,
Vassie
Thomas LaManna
Lion’s Club of Melbourne Markets
Thomas LaManna from the Lions Club of Melbourne Markets works endlessly with the Lions Club helping to change peoples lives, those who are disadvantaged and also in Crisis point. He dedicates time, hours and lots of love towards everyone he cares for
Nominated by Maria Liistro
Anne Jessop
Delfin Lend Lease, Craigieburn
Anne Jessop from Delfin Lendlease Craigieburn works on all the community projects in our area and helps build better lives and a better community. She is dedicated has a wonderful big heart and is very giving.
Nominated by Maria Liistro
The Art of Advocacy
This award pays tribute to the visionary and passionate grassroots leaders who tirelessly work for improved healthcare, information, support services and quality research for their specific condition through support organisations. GSNV supports these organisations and their leaders, offering resources and assistance when needed. These leaders respect the uniqueness of each individual’s challenge and solution, create relationships between groups, and bring their group’s issues and priorities to the attention of the health professionals, research communities and government departments.
Nominees
Mr Sotirios Katakouzinos
Outgoing President, Thalassaemia Society of Victoria
I would like to nominate the Thalassaemia Society of Victoria outgoing President, Mr Sotirios Katakouzinos for the Art of Awards. He has been a dedicated President, Committee/Executive Member and haemoglobinopathies campaigner in active service for over 20 years. I do believe he is due for two lots of long service leave and a very good rest! I could not think of a more worthy candidate as relates to haemoglobinapathy health promotion and community development. He has been a leader, mentor and good friend to so many over the years and indeed given fully and unselfishly toward the promotion and understanding of genetic blood disorders. He is not hanging up his boots yet but will be taking a step back from the hot seat.
I do hope you are in agreement with this nomination as I would like to see his wonderful efforts recognised in genetics health per se. All here agree!!!
Nominated by Louisa Di Pietro
Victorian Masonic Motorcycle Association & Larry King
Order of the Eastern Star
- The Victorian Masonic Motorcycle Association began organising charity motorbike rides in December 2000 when it was decided to hold a charity ride for the Freemasons hospital, with all money raised going to them. Two more charity rides were held in 2000 and 2001, with more than $10,000.00 being raised. Since beginning to work with charitable appeals in this way, the Victorian Masonic Motorcycle Association have raised $195,000.00 and worked with many other worthwhile charities including Canteen and Cystic Fibrosis Victoria. They are now very pleased to be associated with GSNV, with their first ride being held with us in 2007. Another Motorbike Day was held this year. It was a marvellous day and we are looking forward to many more joint ventures! In nominating the VMMA for an Art of Advocacy Awards, I would like to particularly name Larry King as the recipient on behalf of VMMA for the all the outstanding work that he puts into organising these events.
- The Order of the Eastern Star is the largest fraternal organisation in the world to which both women and men may belong. In Melbourne they have been established since 1947. Their main aim is to assist those in need by raising funds in different ways to many charitable organisations. GSNV’s 2007 Motorcycle Ride was the first time that the Order of the Eastern Star was involved in a Motorcycle Event. Their members enjoyed it so much that they wish to continue helping the Victorian Masonic Motorcycle Association run this event each year. Again they made a wonderful contribution to the Motorbike Day this year.
Nominated by Tarli Bogtstra & Vassie Dandanis
GSNV thanks Genetic Health Services Victoria partners in sponsoring this event.
For more information on anything
you’ve read here, please contact Catherine or Leah in the
GSNV office on (03) 8341-6315.
|
_01.gif)
_02.gif)
_03.gif)
_04.gif){kind=small}
_05.gif)
_07.gif){kind=small}
_09.gif){kind=small}
