Introduction and Education

Understanding Genetic Counseling 

Genetic Diseases

Approximately 5,000 genetic diseases have been identified. In addition, for every 1,000 births, five of those will result in infant mortality due to a genetic cause. As well, approximately 50 percent of children in Canadian hospitals are suffering from a genetic disorder (The Privacy Commissioner of Canada, 1995).

According to The Privacy Commissioner of Canada (1995), the four ways in which genetic disorders can occur are through a single mutant gene, through multiple genetic disorders combined with environmental factors, through abnormal chromosomes and through changes in cells. Each method is explained below.

• Single mutant gene: The single mutant gene method means that some diseases are caused by a disorder in one particular gene. Approximately three percent of the population will develop a disease caused by a particular gene. An example of such a disease would be cystic fibrosis (The Privacy Commissioner of Canada, 1995). 

• Multiple genetic disorders combined with environmental factors: This is a combination of the effects of multiple genes and a person’s lifestyle. Such diseases include heart disease, asthma, obesity, and schizophrenia. Approximately one in every ten people is affected by this type of disorder (The Privacy Commissioner of Canada, 1995).

• Abnormal chromosomes: This results from an abnormality in the structure and number of chromosomes a person has. For example, Turner’s syndrome can be detected if a female has a missing X chromosome and Down’s syndrome can be detected if a person has an extra chromosome. Approximately one in 200 people have a chromosomal defect (The Privacy Commissioner of Canada, 1995).

• Changes in cells: This means that a person may develop a disease over time due to a change in the DNA in their cells change, even though they were born with no genetic abnormalities. This change could occur due to a virus, an example of this is AIDS (The Privacy Commissioner of Canada, 1995).

Neal, A. (2009). Breast Cancer Genes Raise Prostate Risks. Retrieved from http://www.hivplusmag.com/NewsStory.asp?ID=19886&sd=02/05/2009

Genetic Testing

Genetic testing is used to identify a specific gene that may carry a genetic disease or to identify a possible abnormality in a gene by analyzing DNA (Genetic Testing, 2007; Burke, 2005). It occurs either by taking a blood sample from an individual, or by taking a sample of amniotic fluid from an unborn fetus (Genetic Testing, 2002). 

The most common type of genetic testing is associated with reproduction (The Privacy Commissioner of Canada, 1995). According to The Joseph and Rose Kennedy Institute of Ethics (2010) and The Privacy Commissioner of Canada (1995), these types of genetic testing are pre-conception screening, prenatal screening and neonatal screening. Each type is explained below.

• Pre-conception Screening: Pre-conception screening involves testing an individual’s DNA in order to detect possible abnormal chromosomes, which may indicate that the individual carries a genetic disorder. This is important if the individual is concerned with passing this gene onto their offspring. Such diseases that can be detected are cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease (The Joseph and Rose Kennedy Institute of Ethics, 2010).

• Prenatal Screening: Prenatal screening is used to determine if a fetus is at risk for having a genetic disease, through a process known as amniocentesis, which involves gathering and testing the amniotic fluid (The Joseph and Rose Kennedy Institute of Ethics, 2010).

• Neonatal Screening: Neonatal screening involves drawing a blood sample from an infant to identify possible genetic disorders that, if detected early on, may slow or stop the progression of the disease. Such diseases may be phenylketonuria (PKU), sickle cell anemia, or Tay-Sachs disease (The Joseph and Rose Kennedy Institute of Ethics, 2010). In Canada, newborn babies are screened for phenylketonuria and hypothyroidism (The Privacy Commissioner of Canada, 1995).

Genetic testing has moved from being simply a research activity to being a community resource. It involves much more than a laboratory analysis. It involves a preparation stage, before the analysis is done, in which basic information is gathered about an individual and their family history of genetic diseases. After the laboratory analysis, comes the interpretation/support stage. This is where the individual learns what the results will mean for them (Harper, 1997). This is where genetic counseling comes in.

Genetic Counseling

Genetic counseling is a process by which a trained professional, perhaps a physician or a social worker, helps an individual or family understand the details of hereditary diseases that they may face, including the probability that the disorder(s) will affect them. It also involves the genetic counselor helping them to make the best decision for the individual or family and helping them to deal with the impact of such disorders (Kessler, 1979).

A Social Worker’s Role in Genetic Counseling

A social worker working as a genetic counselor must first be educated in the many types of genetic diseases, including cancer, Huntington’s disease, and schizophrenia, to name a few. The social worker must be able to provide information such as the nature of the disease, the probability that it will occur in their offspring, and possible treatment (Mealer, Singh & Murray, 1981). The social worker must present them with options but it is important for the social worker to be unbiased and to ensure patient autonomy, as genetic counseling deals with probabilities (Davis, 2001). A social worker may provide on-going support for the clients, as having a child with a disease can severely impact all members of the family, not just the person who has the illness. A social worker in genetic counseling is also responsible for providing resources for the individual or family to obtain further help or information and to get access to services they may benefit from (Mealer et al., 1981).

Down Syndrome Symptoms. (2010). Retrieved from http://www.downsyndromesymptoms.org/causes-of-down-syndrome/

Social and Ethical Dilemmas Related to Genetic Counseling 

After having grasped a more in depth understanding of the physical elements that the client will be going through over the course of their genetic counseling process, the social worker must also be aware of the on-going ethical dialogue they may encounter. In order to best serve the client, it is essential to delve into the sociocultural critiques of prenatal genetic counseling, and make the social worker aware of the ethical and legal constraints on their practice. This segment aims to equip the social worker practicing in a genetic counseling context with the means to properly inform themselves and their clients of these vital topics:

- Legal and medical ethics for practice

- Cultural factors affecting access and use of genetic counseling

- Ethical implications of selecting for and against disability

Legal and medical ethics for practice

 Clinical guidelines are essential for health care providers as they insure a standard level of care for clients receiving prenatal testing services. As a social worker, although you may not be directly involved with clinical practice, you are still legally obligated to be aware of these guidelines as a member of a client’s “circle of care”. Physicians are required to discuss prenatal genetic counseling with all patients who have the appropriate indications (Sharpe & Carter, 2006, pg. 197). These indications include ethnicity, family history, pregnancy history, maternal age and other medical factors (Sharpe & Carter, 2006, pg.193) Furthermore, patients also have the right to request information and counseling even if there is no indication of risk. Canadian medical guidelines also recognize the obligation for the caregiver to refer the client to an alternative provider when they feel that they are inhibited from having a full and forthright conversation regarding the physical and psychosocial implications of counseling (Sharpe & Carter, 2006). Thus, if a social worker’s personal beliefs and values affect their ability to provide unbiased care, they are ethically obligated to refer the client to another caregiver.

 Despite these guidelines for providing care, some argue that they are not finite enough. It is often up to the discretion of a clinician to decide whether a patient is an appropriate candidate for genetic counseling (Sharpe & Carter, 2006). The International Bioethics Committee, as cited in Sharpe & Carter (2006, pg. 203), claim that discerning whether a test is reasonable or unreasonable for the client on an individual case basis is impossible to regulate. This unstandardized process is said to lead to an inconsistency in access and quality of care. 

Cultural factors affecting access and use of genetic counseling

 The varying prevalence of prenatal genetic counseling in certain groups indicates a sociocultural difference in how genetic counseling is perceived and made available. Studies of clinic samples have shown Caucasian individuals of higher socioeconomic statuses seeking out testing at a much higher occurrence than any other group. Conversely, African-American women are less likely to have heard or read about genetic testing for inherited disease (Sharpe & Carter, 2006, pg. 73). This higher prevalence in the dominant strain of society is concerning as prenatal testing becomes more commercialized and available. If the majority of women seeking training are from an affluent social location, genetic perfection may be at risk of becoming synonymous with the higher tiers of social hierarchy and thus, perpetuating that dominance (Andrews, 2001). As a social worker in a prenatal genetic counseling environment it is vital to be mindful of the specific beliefs and attitudes concerning genetic testing that are expressed in differing cultures. 

Ethical implications of selecting for and against disability

 The growing availability of prenatal genetic counseling technologies has brought forward increasing concern for the socially constructed notion of the “disabled body”, raising both moral and ethical dilemmas for counselors and those being counseled (Weil, 2000, pg. 262; Sharpe & Carter, 2006; Andrews, 2001). Andrews (2001) claims that the very existence of genetic counseling changes the very idea of “disabled”, in that the concept of normalcy – sufficient to make life worth living – is seen as being upgraded as testing is offered continually for less serious disorders (pg. 98). Furthermore the idea of what physical and mental qualities deemed necessary to lead a “life worth living” are subjective based on the personal values and experiences of the individual. Both Andrews (2001) and Sharpe & Carter (2006) mention a growing school of thought that asserts that the growing trend of aborting fetuses after positive diagnoses for genetic abnormalities is lending to the fear of a so-called “designer society” whereby difference is discriminated against before birth and disability is seen as an act of societal deviance. Despite genetic counseling appearing to give women more power, it actually asks women to, “ratify social prejudice through their reproductive choice,” (Andrews, 2001, pg. 100). He asserts that prenatal genetic testing creates an environment in which people believe that if they are offered genetic counseling, they have an obligation to act on it (Andrews, 2001). 

However, the preconceived notions that physicians have concerning living with a particular genetic disorder may be inconsistent with the lived experiences of someone with that condition (Sharpe & Carter, 2006).  A social worker may encounter further dilemma when counseling a couple that wishes to select for a disability rather than against it, and must be aware of the associated stigma surrounding this issue. A common occurrence of this is seen in deaf parents using genetic counseling processes to select for the genetic abnormality that would produce deaf offspring. It is argued that in many of these cases, the parents do not solely see the disability as a part of their physical identity, but rather an expression of their cultural lifestyle (Sharpe & Carter, 2006). However, opponents of this practice assert that selecting for disability is, “ not in the best interests of the child because it restricts the child’s future options and thereby threatens their autonomy,” (Sharpe & Carter, 2006, pg. 201). These differing views on disability selection may be a major source of professional and personal dilemma for the social worker as the International Bioethics Committee rejects the practice of prenatal genetic counseling for this purpose (Sharpe & Carter, 2006, pg. 202). There is also concern among disabled populations that the selection against genetic mutations will lead to a further marginalization of their minority group, and that funding to aid those with disabilities that can be selected against will be diminished as a result of the diminishing prevalence (Weil, 2000, pg. 267).

Moving Forward

As a social worker in a prenatal genetic counseling context, it is vital to acquire a thorough understanding of the physical processes, sociocultural implications, and ethical concerns as a means for preparing to meet with a client. Genetic counseling is a rapidly changing field with continual technological advances that bring forth a confluence of moral and ethical issues, and it is essential for a social worker to remain aware of the current narrative in order to provide clients with the highest quality of care.

Salem News. (2010). Retrieved from http://www.salemnews.com/articles/october232010/downsabortions-cf.php

Counseling and Therapy

The social workers role in genetic counseling 

• Social workers provide psychosocial services that help individuals and families with genetic conditions (Duke Eye Centre, 2009).
• Social workers are the first people who see the client after they have completed the initial registration for their genetic problem (Dils & Smith, 1980).
• Social workers need to be able to understand genetics, human behaviour and have appropriate counseling skills (Duke Eye Centre, 2009). 
• It is important for the social worker to recognize that clients can develop social and emotional difficulties related to their genetic condition. Social workers will need to be able to interpret these difficulties to the physician and to other helping professionals involved (Duke Eye Centre, 2009).
• After a genetic diagnosis, social workers need to provide supportive and therapeutic counseling for problems that could arise such as the weakening of marital and sexual relationships (Dils & Smith, 1980).
• Other roles Include (Dils & Smith, 1980): 

- Conducting follow up interviews

- Evaluation of services 

- Clarification and reinforcement of genetic information to the client

- Referring clients to community resources; the social worker needs to be the liaison between the family and resources

Issues that Social Worker’s Need to Be Aware of When Working with Clients

• Be aware of the clients defense mechanisms in order to help them face the situation realistically (Weiss, 1976).
• Recognize the emotional impact that the news of a genetic complication might have (Weiss, 1976).
• Families may face anxieties that they may not want to discuss with their physician; a social worker can be in tune with these unexpressed fears when they interview the client (Weiss, 1976).
• Social workers have to understand clients have the right to make their own decisions (Dils & Smith, 1980).
• Social workers have to be aware of the value conflicts that exist within the client as well as within themselves (Dils & Smith, 1980).
• Be aware that there is a lot of stigma placed on families that have children with genetic disorders (Dils & Smith, 1980).
• The genetic diagnosis often strains the relationship between the parents, and often gets worse when the issue of having another child arises (Dils & Smith, 1980).
• If a child is born with a defect, the parents may go through emotion shock (Dils & Smith, 1980).
• They might not love their child as society says they should, and may have secret feelings of wanting their child to die (Dils & Smith, 1980).
• Social workers need to be aware of the degree of disability/deterioration that will be experienced from the genetic disorder (Dils & Smith, 1980).
• Also the decision to keep the child often depends on cultural background and psychosocial backgrounds (Duke Eye Center, 2009). 
• Parents may need help in the decision to place a child in an institution or place him/her  up for adoption (Weiss, 1976). 

What should social workers focus on in practice?

Social workers need to focus on why the client is at the clinic in the first place and try to manage the client’s problem based on their specific situation. The expectations and fears from the client need to be considered in order for the social worker to effectively aid in the genetic counseling they are receiving (Weiss, 1976). 

Parents may need help in dealing with their responses to confirming the diagnosis of a genetic disorder. The social worker needs to help sort out emotional conflicts, especially with additional childbearing involving the genetic risks (Weiss, 1976).

It is important for the social worker to be geared towards the total care of the client and to be able to help in understanding the feelings the client is experiencing (Weiss, 1976).

The main goals of the social worker while working with clients are:

• Maximizing client’s benefits from treatment (Dils & Smith, 1980).
• Aid in helping the client get through family conflict resulting from genetic problems (Dils & Smith, 1980).
• Helping the client adapt positively to living with their genetic problem or family member’s genetic problem (Dils & Smith, 1980).
• Help to enhance overall quality of life for client and family (Dils & Smith, 1980).

Psychodynamic impact of genetic disorders on clients: 

• They are often unprepared for what they can expect involving tests, examinations, questions and special tests at the clinic (Dils & Smith, 1980). 
• They will most likely be anxious about what is going to happen to them and uncertain about the future (Dils & Smith, 1980).

Impact on couples:

• Partners could blame each other or their spouses family for the genetic problem (Dils & Smith, 1980).
• They may feel they are defective because they carry a harmful gene and feel guilty for passing it on to their children (Dils & Smith, 1980). 
• There is often fear that the genetic counsellor will reveal the specific partner that is at fault for causing the genetic disorder (Dils & Smith, 1980).
• Mothers may feel guilty for drinking or smoking during pregnancy, or for not wanting to have a baby with a genetic condition (Dils & Smith, 1980)

Prajna Counselling Centre. (2008). Retrieved from http://www.prajnacounsel.com/Family.html

Interviewing Strategies 

Non-directiveness

The concept of non-directiveness is that the role of the genetic counsellor should be an information provider instead of a decision maker. Information should be presented in a neutral, non-judgmental way. ‘Neutrality’ is often used to describe the ideal framing of communication between counselors and clients. This method should guarantee the client’s ability to freely decide what their next steps, if any, should be according to his or her own values. Non-directiveness is essential for counselor/client communication; to ensure the client does not feel pressured in any way, not only through counsellor pressures, but familial and societal pressures as well (Pilnick, 2002). 

Non-directiveness and autonomy 

Many critics have expressed that directive practice in genetic counseling threatens client autonomy. Autonomy is a key principle of bioethical approaches to medicine, and is one way of guarding against accusations of medical dominance or paternalism. Moreover, assisting clients to make autonomous choices also involves assisting them to develop the skills needed for the task of moral deliberation. To assist in these situations social workers must understand what the client wishes to accomplish (Pilnick, 2002).

Client autonomy vs. professional expertise 

Another issue related to autonomy is the fact that it may not be desirable to all those receiving a counseling service. In client-centred counseling, this point is rarely discussed, but it also has a influence on how the issue of what ‘most people’ do is to be handled. If counselors fail to answer direct questions of this kind, or deliberately avoid providing a suggested course of action, are not necessarily upholding the principle of client autonomy. However if a client wishes to give up his or her right to choice, how can the principle of non-directiveness be maintained? Therefore any response to this kind of question may be viewed as conflicting with one of the principles of genetic counseling. It is important to remember that clients ask questions about desirable courses of action of counselors not simply because they are having difficulties making their own minds up, but because counselors are rightly seen by their clients as experts in the field (Pilnick, 2002).

Case Studies 

A mother of a seven year old girl with Marfan syndrome, a disorder of connective tissue, who would grow excessively tall if she did not get a certain hormone therapy, needed intensive counseling about how to handle with her daughter the immediate onset of puberty and menstruation caused by the treatment. This was particularly upsetting to the mother who had marital problems, a history of years of sever menstrual cramps followed by a hysterectomy, and an inability to be warm with her daughter (Weiss, 1976).

Questions:

-How much of an impact will the mother’s past experiences influence her ability to cope with her daughter’s condition? How might you help the mother manage these emotional difficulties?

-What are some reasons that might be affecting the mother’s ability to get close or ‘warm’ with her daughter?

-What types of emotions might the seven year old daughter be experiencing? 

A father of a four year old child who had Hurler’s syndrome, which, among other manifestations, involves coarse features, severe mental retardation, and a prognosis of an early childhood death, was able to share his feelings with the social worker about the child eventually dying and also about his sexual frustrations with his wife, who seemed so immersed by her guilt that she took care of her child to the point of exhaustion, thereby shutting out her husband (Weiss, 1976). 

Questions:

-What type of emotions do you think this father is dealing with?

-What type of emotions do you think the mother is dealing with? 

-How might the diagnosis of a genetic disorder in their son affect their present relationship? What might be the issues faced for future child bearing?

Another parent, an adoptive mother of a young adult who had regressed from high intelligence to the I.Q. level of a three month old infant as a result of a genetic disease called San Filippo syndrome, was able to express her desire to have her daughter die at home without prolonged hospitalization and intravenous feeding. The social worker conveyed the mother’s request to the physician. The mother got her wish, and with it an inner satisfaction that she had helped her daughter as much as she could to end her days happily (Weiss, 1976). 

Questions:

-How might you deal with this situation if it conflicted with your values and beliefs?

-In what ways did the social worker help this family that maybe other helping professionals wouldn’t be able to? 

Services and Resources

Services and Resources

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For Parents with Children Ages 0 to 18

For Individuals and Families without Children

“After receiving a diagnosis of a severe genetic disorder, there is often confusion with the individual, parents, and family. This confusion occurs before functional adjustment can take place. During this period of confusion and initial adjustment the genetic social worker can be of great service to the individual and/or family by putting them in contact with appropriate resources, whether financial, medical, or educational” (Mealer, F.W., Dharmdeo, N.S., & Murray, O.S., 1981).

Introduction 

General Description of Services for Parents and Children Ages 0 to 18

How to Access Services

Types of Services and Agencies

Introduction 

Here you will find information about services and supports for parents expecting a child with special needs. This section will also provide information about services and support for children from birth to eighteen years old. The first part will give you a general description of the services available in Hamilton and surrounding areas. The section will then explain how to access these services, what services are available, and some agencies that provide these services. We will only provide information on public agencies rather than private ones, but we will explain how you can find information about private agencies. 

General Description of Services for Parents with Children Ages 0 to 18

Within Hamilton, numerous agencies, organizations, and practitioners work with parents and children with special needs associated with genetic disorders. The provincial Ministry of Child and Youth Services (MCYS) and the Ministry of Community and Social Services provide funding for many agencies. There is also the option of obtaining private services, such as social workers who have set up a private practice and provide counseling. This segment will help you understand what services are typically required for these families and where to find them.

How to Access Services

The best way for a family to access a multitude of services is to go to a social worker who can conduct an intake assessment. Many family doctors’ offices have social workers available. By having one person as a contact, families can obtain the referrals they need more efficiently. There are also many public agencies with social workers on staff. These agencies can be great starting points for families. We have listed some of these agencies below. 

Children’s Rehabilitation Team. (2007). Retrieved from http://www.childrensrehabengineeringteam.com/grants06.htm

Types of Services and Agencies

Assessment

An assessment is an evaluation conducted by a professional, such as a social worker. The assessor will collect information and make recommendations on the child and/or family’s needs.

Where: CPRI; Hamilton Health Sciences; 

Audiology 

An audiologist is a healthcare professional that specializes in Audiology. They are able to diagnose, treat and monitor hearing disorders. 

Where: Early Words

Child Care or Play groups

Child care and play groups can offer children with special needs the opportunity to learn life and social skills. It can also offer families time off from care-taking duties, which is extremely important when caring for special needs children.

Where: Ontario Early Years Centres; Integration Resources Hub; City of Hamilton

Family Doctor

A family doctor is a medical doctor who specializes in the treatment of an individual’s general well-being. Family doctors operate in their own private practices. By having a family doctor, parents of special needs children can access a variety of additional services, as these doctors can refer families to many non-medical services. There are many different ways to find a family doctor although it is well-known that there is a shortage in Ontario.

Where: Heath Care Connect

Financial Assistance

Caring for a child with special needs is usually more expensive than caring for an average child. There are various assistance programs and tax benefits available for parents, depending on their income and their child’s situation.

Where: Assistance for Children with Severe Disabilities (ACSD)

Helps parents with some of the additional costs of caring for a child with a disability

Ranges from $25 to $410 per month but it depends on the family’s income, child’s costs, how disabled the child is, and what supports the child needs

The child must be under 18 years old, live at home, and have a severe disability

Parents apply through the Ministry of Child and Youth Services

Special Services at Home (SSAH)

Helps families who are caring for a child with a developmental or physical disability

Helps the child remain at home

Income is not a determinant for whether a family will qualify

Financial support depends of what the child needs

Families apply through the Ministry of Child and Youth Services

Provincial Assistive Devices Program (ADP)

This program provides financial support for many kinds of equipment and supplies such as: wheelchairs, walkers and strollers, hearing aids, and artificial limbs

Families can apply through the Ontario Ministry of Health and Long-Term Care

Families of children with special needs can qualify for this tax credit by having the child’s family doctor fill out the T2201 Disability Tax Credit Certificate

This credit can save families $1500.00 a year in income taxes

Infant Development

“Neuroscience and human development studies show that experienced-based brain development in the early years of life affects learning behaviour and health throughout a person’s life (THE EARLY YEARS STUDY, 1999).

Where: Hamilton Health Science – Infant Parent Program;Hamilton Best Start; CPRI

Parenting Support and Courses

Having a child with special needs can be challenging, as parents have to readjust and learn how they will care for this child. Parents can take a parenting course to develop special skills related to parenting a child with special needs.

Where: Ontario Early Years Centre; City of Hamilton

Support Groups

Raising a child with special needs is challenging. It may be helpful for many families to join general support groups for families in a similar situation or a support group for families of children with a specific disorder. The most common genetic disorders are:

Down Syndrome  

Cystic Fibrosis 

Sickle Cell Disease

Tay-Sachs Disease 

Spina Bifida

Where:  Down Syndrome Association of Hamilton; Canadian Cystic Fibrosis Association; Sickle Cell Association of Ontario; Canadian Association for Tay-Sachs and Allied Disease; Spina Bifida and Hydrocephalus Association of Ontario

Occupational Therapy

Therapy designed to restore or maintain a patient's ability to perform tasks used in daily living, often through developing ways to modify or adapt activities (The Myositis Association, 2010). 

Where: Ontario Society of Occupational Therapists ;For further information, contact your family doctor for a referral.

Personal Support Workers

A Personal Support Worker is a health care professional who offers one-on-one care for persons requiring individual assistance, including special needs children. This service is typically available for older children.  

Where: For further information, contact your family doctor for a referral.

Physiotherapy 

Physiotherapy is the treatment of a disease through physical activity with the goal of restoring and/or maintaining functional activities (The Myositis Association, 2010).

Where: College of Physiotherapists of Ontario ;For further information, contact your family doctor for a referral.

Therapy or Counseling

Parents of children with special needs often need additional emotional support. They can attend individual or family therapy/counseling.

Where: For further information, contact your family doctor for a referral.

Respite

Respite offers planned temporary relief and rest for families of children with special needs. The respite may be provided at home or out of the home. It also gives children the chance to socialize with others and develop their social and recreational skills.

Where:  SSAH; Charlton Family Support Program

Speech Therapy

It is a medical service that diagnoses and corrects speech or language defects that children with special needs may have. 

Where: Early Words

Human Growth Hormone. (2010). Retrieved from http://www.humangrowthhormone.org.uk/news/human-growth-hormone-and-cystic-fibrosis

Services and Resources

Individuals/Families without Children

Introduction 

General Description of Services for Families

How to Access Services

Types of Services and Agencies

Introduction 

Here you will find information about services and supports for individuals or families without biological children due to genetic factors. These factors may result in a termination of a fetus or the conscious decision not to have children because of an inherited gene. This section will provide information about services and support for these individuals or families. First we will provide a general description of the services available in Hamilton and surrounding areas. The section will then explain available services, how to access these services, and some agencies that provide them. We will only provide information on public agencies rather than private ones, but we will explain how you can find information about private agencies. 

General Description of Services for Individuals or Families

Within Hamilton, numerous agencies, organizations, and practitioners work with individuals and families dealing with the emotional outcome of not being able or choosing not to have children due to genetic factors. Many of these services are associations that receive some public funding and donations. There is also the option of obtaining private services, such as social workers who have set up a private practice and provide counseling. This segment will help you understand what services are typically utilized for these individuals and families and where to find them.

How to Access Services

Usually, when an individual or family learns of a genetic disorder in a fetus, they have already met with various medical professionals. The same is true for people who learn that they carry a gene for a genetic disorder and choose not to have biological children. Therefore, people in this situation are often connected to many of the services we have listed by these professionals. Another way to access the services below is through a social worker at a family doctor’s office or at a general social work agency. It is important to know that people in these circumstances face a variety of options when making family planning decisions, which our list attempts to reflect.

People’s Daily Online. (2006). Retrieved from http://english.peopledaily.com.cn/200612/14/eng20061214_332476.html

Types of Services and Agencies

Adoption

This is a potential option for individuals or families who cannot or chose not to have children. 

Where: Adoption Counsel of Canada; Children’s Aid Society of Hamilton; The Catholic Children’s Aid Society of Hamilton

Assisted Reproductive Technology (ART)

ART refers to the process of using various methods performed by a medical professional to assist in the efforts to become pregnant. Examples include: in vitro fertilization; surrogacy; donor sperm or donor egg; use of fertility drugs.

Where: For further information, contact your family doctor for a referral.

Foster Care 

Foster care is full-time, substitute care of children outside their own home by people other than their biological or adoptive parents or legal guardians (Children’s Health, 2010) 

Where: The Children’s Aid Society of Hamilton; The Catholic Children’s Aid Society of Hamilton

Sperm Donation

This is the process by which a third-party man donates his sperm to aid in a woman’s efforts to become pregnant. This may be an option for individuals or families where the man carries a gene of a genetic disorder and does not want to risk passing it on to a child.

Where: For further information, contact your family doctor for a referral.

Surrogate/Surrogacy

A woman who bears a child on behalf of a couple unable or choosing not to have a child, either by artificial insemination from the man or implantation of an embryo from the woman 

Support Groups

It may be helpful for many individuals and families to join general support groups for those who terminate or chose not to have children due to genetic factors.

Where: IAAC

Therapy/Counseling 

Individuals and families experiencing a termination or choosing not to have children due to genetic factors often need additional emotional support. They may find one-on-one or family counseling beneficial 

Where:  Planned Parenthood Society of Hamilton; For further information, contact your family doctor for a referral.

ABC News. (2010). Retrieved from http://www.abc.net.au/news/stories/2010/09/02/3000900.htm

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References

Adoption Council of Canada (n.d). The Council >About ACC. Retrieved http:// www.adoption.ca/TheCouncil.html

Affiliated Services for Children and Youth (n.d). Hamilton Best Start. Retrieved from http://www.ascy.ca/projects_best-start.htm

Andrews, L. B. (2001). Future Perfect. New York: Columbia University Press.

Burke, W. (2002). Genetic testing. New England Journal of Medicine, 347(23) 1867 – 1875. Retrieved from, http://www.nejm.org/doi/full/10.1056/NEJMoa012113

Catholic Children’s Aid Society of Hamilton (2010). Adoption Services. Retrieved from 

http://www.hamiltonccas.on.ca/adoption/index.php

Catholic Children’s Aid Society of Hamilton (2010). Foster Care. Retrieved from http:// www.hamiltonccas.on.ca/fostercare/index.php

CHEO (2010). Financial Tips for Parents of Children with Special needs. Retrieved from 

http://www.cheo.on.ca

The Children’s Aid Society (n.d). Adoption. Retrieved from http://www.hamiltoncas.com/       adoption.php

The Children’s Aid Society (n.d). Foster Care. Retrieved from http:// www.hamiltoncas.com/foster.php

Child and Parent Resource Institute (2006). Services and Programs. Retrieved from http://www.cpri.thehealthline.ca/programs.asp

Child Care Information Hamilton (2010). Early Childhood Resources. Retrieved from http://www.inform.hamilton.ca/record/HAM0954?Number=83

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