Ethical, Legal, and Social Implications Associated With This Case

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Ethical Issues
  • Deciding whether or not to pursue testing: Genetic testing often carries with it significant ramifications, and the decision of whether or not to pursue it can create quite a dilemma. However, when genetic testing is used to diagnose a condition in a child with apparent birth defects, the decision to pursue testing is usually straightforward.

  • Revealing nonpaternity: Sometimes when a child undergoes genetic testing, samples from the parents are also needed. While a karotype should not reveal paternity results, other genetic testing may reveal inconsistent parent and child genotypes. For example, consider a patient that has an autosomal dominant condition in which no de novo mutation cases have been observed. If both parents undergo testing and the mutation that causes the condition is not found in either parent, nonpaternity is a possible explanation. Explaining to families that nonpaternity may be revealed prior to submitting parental samples is the best way to avoid a sticky situation.

Jane's case: The decision to proceed with chromosome analysis was an easy one for her parents to make. Her parents wanted to know what was responsible for Jane's medical problems; and because Jane was born with birth defects, genetic testing might be able to provide an explanation but would not increase the likelihood that Jane would be discriminated against. The decision to pursue testing was also made easier because nonpaternity was not an issue for this family.

Legal Issues

For the purposes of this curriculum, legal issues are divided into the following 3 groups:

  • Genetic discrimination in any circumstance (discrimination by employers, insurance companies, potential spouses, biological parents, adoptive parents)
  • Genetic malpractice (duty to recontact, duty to warn, and wrongful life or wrongful birth suits)
  • Family legal planning (wills, custody, and financial planning)

Jane's case: Jane has not experienced genetic discrimination nor has she received inadequate medical care. For Jane's family, creating wills and developing a solid financial plan to ensure Jane's future care are the only relevant legal issues. Her parents realize that Jane will always be dependent on others for care. Should Jane outlive her parents, proactive legal planning will ensure that Jane continues to be well cared for.

Social Issues
  • Psychological impact (maternal guilt, familial grief, familial anger, etc.): The psychological impact of having a child with a genetic condition is tremendous. Family members often experience disbelief, grief, and anger. In addition to the emotions that all other family members go through, mothers often blame themselves for the child's problems and also experience guilt.
  • Re-adjustment of family relationships (husband-wife, parent-child): Often, the dynamic among family members is changed when a child with special needs is born. Husband-wife relationships may become more focused on the care of the child. Siblings of children with special needs may feel overshadowed by the attention their sibling receives.
  • Financial changes (increased healthcare expenses, full-time care provider, long-term planning): Families of children with special needs may experience tighter finances. Often, health insurance does not cover all of the child's medical expenses. Additionally, non-healthcare-related expenses are likely to be higher.
  • Modification of hobbies and activities: When a child with special needs is born, families may need to find new hobbies that all family members can participate in.

Jane's case: The ELSI issues that impact her family the most are the social issues. In some of the video clips, these issues were discussed. Family members have experienced a wide range of emotions, including shock, blame, and grief. Family life has undergone some changes. The family goes out less often than it did before Jane's birth and fewer out-of-town vacations are taken. However, the family does spend more quality time together and visits frequently with Jane's grandparents. The family has also been impacted financially. For example, Susan mentioned that the family pays to provide Jane with additional therapies; and, until the age of 3 years, they paid for all of her diapers. Susan also mentioned the need to take additional time off from work to care for Jane when she is ill.