for assisted conception and infertility:
A patients’ rights
The ESHRE Patient Leader Forum (EPLF) links patient leaders and health
professionals around the world to discuss patient and consumer needs. The EPLF
aims to provide
opportunities for patient leaders and health care professionals to work in
partnership to address government policy barriers to accessing affordable, safe
The vision for the International Consumer Support for Infertility (iCSi), a
network of patient leaders from 39 countries, is to empower patients to become
full partners in ART healthcare and public policy by building effective
relationships with providers, governments and media world-wide.
coalition acts as a global voice to government as well as medical, mental health
authorities, industry and the media. iCSi coalition members act as a national
voice in their respective countries to bring the needs of people who benefit
from ART to public awareness.
Remains committed to assisting all men and women
experiencing infertility, including those in lesser developed countries,
in their quest to fulfil their family building dreams;
Respects not only the importance of their commitment to their own countries but
also contributes to international cooperation and collaboration to advance
infertility understanding, options and compassionate support globally;
Encourages heightened investment in research into infertility causes including
environmental factors and the disease burden in developing countries due to poor
Provides compassionate support to men and women experiencing infertility as they
deal with not only the physical aspects of their journey but also the serious
emotional and financial impacts;
Respects religious and cultural diversity;
signatory to the Patient Centred Healthcare Declaration of the International
Alliance of Patients’ Organisations (IAPO);
represented on the United Nations NGO Health Committee.
coalition holds the following principles and practices as essential to the
rights of all experiencing infertility:
infertility has been recognised by the World Health Organisation (WHO) as a
public health issue, affecting tens of millions of people worldwide, it should
be universally recognised as a medical condition or disease, which causes
Assisted Reproductive Technologies (ART) are standard, proven treatments for
infertility and should be reimbursed in each country’s national health scheme.
People experiencing infertility should have equity of access to high quality
care services, focusing on the best and most recent scientifically and
clinically approved guidelines.
Global principles for assisted conception and infertility: A patients’ rights
People experiencing infertility should expect to receive open and honest
communications from professionals who, through their own continuing education,
maintain their knowledge of the most scientifically advanced and proven medical
and emotional care available and in the instance of adoption professionals, the
latest and most accurate information on laws and rules governing adoptions.
People experiencing infertility
access to practical information about all their family building options,
including clinical alternatives, domestic and foreign adoptions and approaching
life without children.
People experiencing infertility
access to comprehensive and understandable information about all aspects of
diagnostic tests and treatments, together with their relative risks. They should
also have access to their personal medical records: their confidentiality must
be protected and their distribution must be guided with patient consent.
Infertility does not discriminate by race, gender, culture, faith or ability to
pay and our health care systems must not discriminate against those with the
condition by denying them access to appropriate and necessary high quality care.
Infertility remains a highly stigmatised medical condition that can lead to
depressive illnesses. Therefore, the physical treatment of the patient must be
accompanied by the availability of counselling and support services to help
address the psychosocial impacts of the medical condition/disease.
experiencing infertility should be encouraged and supported to take advantage of
professional and peer-led support groups as research has demonstrated these
outlets contribute measurably to more positive clinical outcomes.
Decisions to use donor gametes, donor embryos or surrogacy are multi-faceted;
incorporating medical, legal, ethical, social, emotional and psychological
aspects. Clinics should not only inform couples of the medical diagnosis and
treatment but also provide through counselling the opportunity to explore in
detail with the couples and the donors, all the issues that the use of donated
material and surrogacy necessarily raises. Donors should be open about their
medical and genetic history and be tested for transmissible diseases.
Where donor gametes, donor embryos or surrogacy are used, the resulting
children’s interests must be acknowledged and the basic principles of openness
and honesty should apply; that the donor-conceived individuals or those born
through a surrogacy arrangement have a right to information about their
biological origins. While it is acknowledged that not all individuals will be
made aware of their donor conception (for religious, cultural, social and/or
psychological reasons). Parents should be provided with information and
guidance with regard to informing their children about the use of donor gametes
in their conception.
surrogacy arrangements, to provide certainty for the child as to his or her
parentage and remove the need for the intending parents to adopt their own
genetic child, a mechanism should
exist for the intending parents and the surrogate to apply to the Courts for a
parenting order to recognise the genetic parents in law as the legal parents.
Whilst acknowledging the donor-conceived individual’s right to have
access to and knowledge of their donor, legislation in some countries does not
provide for this. Thus in the event that the identity of the donor is requested,
that donor should have an opportunity to explore the implications of revealing
his identity. Where donors have donated on the understanding that they would
remain anonymous, their consent should be required to provide identifying
information to offspring. Preferably,
donors should donate in the
knowledge that identifying information about them will be available to the child
when he or she reaches 18 years.
physical and emotional health and well being of all children conceived via
assisted reproductive technologies (ART) or acquired through adoption is of
paramount importance and should be assessed via government-supported
longitudinal research to confirm the continuing efficacy and effectiveness of
quality of care provided by those offering assisted reproductive technologies
and associated counselling services should be monitored by nationally recognized
accrediting agencies, which should include patient representatives, under
established, evidence-based guidelines, and where an appropriate accrediting
body exists, with the direct participation of consumers.
Meaningful nationwide and practice-based clinical statistics regarding
infertility treatment outcomes must be disclosed to the public in an
understandable, transparent and comparable manner for inter and intra country
Infertility can be influenced by a variety of known risk factors such as
smoking, alcohol and substance abuse, obesity, age and sexually transmitted
diseases. Public preventative education must be supported to help preserve
fertility and reduce the impacts of unhealthy lifestyle behaviours and