What is Genetic Testing's purpose on kids?
Will this hurt?
Why is there a need for a child to undergo a procedure that he has no clue about?
A child is meant to enjoy, learn, and experience things, yet for him to undergo this procedure can be somehow frightening since this is not just a typical visit to the doctor where he opens his mouth, breathe, and tell his doctor how he is feeling.
It involves a variety of tests.
According to the Kids Health website, genetic tests are conducted through analysis of tiny blood samples or body tissues.The procedure determines if a mother, husband, or a baby has genes that have inherited disorders.
Over the years, genetic testing has evolved in order for doctors to be able to locate missing and/or defective genes.From that point, doctors determine the variety of genetic test required to establish a specific diagnosis on a certain illness that the doctor alleges.
A minute sample of blood, skin, bone, or other tissue is just what the doctor ordered for deoxyribonucleic acid (DNA) screening.
The website features eight reasons why doctors would advise genetic testing, and three of them involve children:
1.) A child has a severe birth defect.
- The website clarifies that not all kids with birth defects possess genetic problems, and adds that an exposure to a toxin, infection, or physical trauma before birth could be the culprits of some birth defects. Frequently, the defect's cause is unknown.Although a child possesses a genetic problem, there is always a case that it was not inherited and it was only triggered by a spontaneous error in the child's cells.
2.) A child possesses medical concerns that can be genetic.
- Should a child manifest medical concerns in more than one body system, doctors can recommend genetic testing to discern the cause and establish a diagnosis.
3.) A child features medical problems that are identified as a specific genetic syndrome.
- Genetic testing is administered to confirm the diagnosis.In some occasions, it can also help identify the specific type or severity of a genetic illness, that can help identify the most suitable treatment.
Some points to consider
As stated by the American Academy of Pediatrics' Ethical and Policy Issues in Genetic Testing and Screening of Children, there are nine areas that must be considered when it comes to the genetic testing and screening of children.
1.) General Recommendations.
- The decisions to offer this procedure should be done for the child's best interest.The procedure is best recommended in terms of genetic counseling, which clinical geneticists, genetic counselors, or any other health care provider equipped with the right training and expertise can conduct.
2.) Diagnostic Testing
- The child's parents must be briefed about the testing's risks and benefits, and their permission must be also acquired.At best, the child's consent should be also considered.Pharmacogenetic testing children, when done for therapeutic purposes, is acceptable, provided that the parents or guardian and the child approve the procedure. Should the test result features implications beyond drug targeting or dose-responsiveness, broader implications must be tackled prior to the procedure.
3.) Newborn Screening
- After being briefed about the procedure's pros and cons, parents must be granted the option to refuse it, and the refusal must be accepted.
4.) Carrier Testing
- The American Academy of Pediatrics [AAP] and the American College of Medical Genetics and Genomics [ACMG] opposes carrier testing in minors as it fails to provide health benefits in childhood. They also oppose conducting school-based testing or screening program for the environment is unlikely to be helpful to voluntary participation, thoughtful consent, privacy, confidentiality, and proper counseling about test results.
- In the case of pregnant adolescents or adolescents considering reproduction, genetic testing and screening must be served as clinically recommended and its risks and benefits must be thoroughly addressed.
5.) Predictive Genetic Testing
- Parents or Guardians may permit this variety of procedure for asymptomatic children who are at risk of childhood-onset conditions.It is recommended that the child's approval should be obtained.
- Health care providers must exercise caution in conducting the procedure to minors without the involvement of their parents or minors. Results can yield significant medical psychological, and social implications for both the minor and other family members.
6.) Histocompatibility Testing
- The tissue compatibility testing of minors is permitted to benefit immediate family members, yet it should only be conducted only after a careful exploration of the psychosocial, emotional, and physical implications of the minor serving as a potential stem cell donor.
- The rules and regulations for genetic testing of children in biological families must be also observed for both adopted children and children awaiting placement for adoption.
- Parents or guardians must be instructed to disclose the results to their child at an appropriate age.
9.) Direct-to-Consumer Testing
- Both the AAP and the ACMG oppose the use of direct-to-consumer and home kit genetic tests as they lack oversight on test content, accuracy, and interpretation.
A Pacific Standard article provides a warning about giving children genetic tests kits.At present, genetic testing becomes a common routine due to the influx of genetically guided, customized health care and the increasing popularity of price-friendly direct-to-consumer genetic services.
The article mentions that familiarity about a person's genetic makeup has risks that can be tough to deal with, even for adults.Fortunately, the American Society for Human Genetics [ASHG] has established a set of recommendations on genetic testing in both children and adolescents.
The said guidelines say that DNA's can be tested for both medical and recreational reasons, and it adds that people can learn much more about their genes.ASHG cautions, however, that familiarity with a genetic test's results can lead to major, life-long consequences.
Nowadays, many companies sell genetic tests without a doctor's permission, and ASHG discourages the purchase of such items.
Genetic testing can save lives, especially that of children.However, a good amount of consideration for the child should be a top priority. Hence, having a sincere conversation about this matter can go a long, long way for both parents and children.