Genetic Testing and Counseling in Pregnancy Essay Example for Free

patrimonial Testing and Counseling in Pregnancy EssayFor many women, motherhood is met with excitement. However, for a few partner offs, the pregnancy undersurface take a completely different turn when the fetus is determined to be afflicted with infantile amaurotic idiocy disease. This is a transmitted condition, usually embed in Caucasians, and originally those of Jewish descent, and develops in 25% of cases when both p bents carry the recessive gene (National Tay-Sachs and Allied Diseases NTSAD, n. d. ).Genetic counseling is a relatively new concept in wellnesscare and is the process of up safekeeping state understand and adapt to the wellness check, psychological and familial implications of genetic contributions to disease (National Society of Genetic Counselors NSGC, 2005, para. 2). For the men and women veneering a pregnancy involving Tay-Sachs, genetic counseling is a viable and important option to consider. However, to ensure spirit care and education, gen etic counseling submits to involve a team of healthcare professionals from a anatomy of backgrounds.Interdisciplinary Team Members and Their Roles in Genetic Counseling Appropriate members of a multi-disciplinary team for the Trosacks let in a genetic counselor, a nutritionist or dietician, the high-risk OB-GYN doc, a registered nurse specializing in high-risk perinatal care, and a therapist specializing in marriage and family therapy needs. Each member of this team leave behind add a unique perspective to the Trosacks case. The genetic counselor has graduate-level education and experience in both health check genetics and counseling (NSGC, 2005, para. 1).Using her expertise and skills, she allow review the medical history for Mr. nd Mrs. Trosack, and their families, fall upon other genetic risks that may exist and explain inheritance patterns. She testament provide information and resources for get along education on genetic disorders, so that they can affect to disclose ab verboten Tay-Sachs and unite with other families facing the disease. In addition to this expert information, the Trosacks will benefit from a nutritionist or dietician. The nutritionist non only has special training in the area of nutrition, but also in educating patients rough their options and making nutritious choices.In general, a nutritionist can advise individualson the nutritional practices that will promote good health, and structure and recommend diet patterns for whole familiesincluding guides to the correct preparation of meals and shop for the right foods (Princeton Review, n. d. ). He will practice a nutrition assessment, provide education on redundant nutritional needs due to pregnancy, and even assist with meal planning to ensure a health pregnancy. He will continue to assess and make recommendations on Mrs. Trosacks nutritional needs base on lab work throughout the pregnancy.The patients overall care is the responsibility of her OB-GYN, who specializes in high-risk pregnancies. A high-risk OB-GYN has a lengthy education, residency and fellowship history to gain noesis in caring for older patients, patients with specific medical conditions and patients carrying a pregnancy that has been determined to need specialised care. The perinatologist is not only capable of making diagnoses other obstetricians may miss, but can also perform specialized procedures and administer medications across the placenta (Perinatologists, n. d. ).She will assess the medical needs of Mrs.Trosack and the fetus throughout the pregnancy, monitoring device fetal growth and development, order diagnostic tests as needed, and provide referrals to other specialists as needed. Working with the physician will be a nurse specializing in prenatal clients. This nurse has chosen to expand on her nursing education, taking additional classes and obtaining certifications specific to perinatal care. He will assess the couples understanding of pregnancy and prenatal care at the first ensure and make a plan to educate them on each stage of pregnancy and fetal development as well as options available during labor and delivery.Additionally, he will ensure the couple understanding for each test or referral suggested by the physician. Due to the nature of the diagnosis, the couple will also benefit from a marriage and family therapist on their team. The couple has already expressed exasperation over the diagnosis, and volley between denial and acceptation of the diagnosis. Additionally, Mrs. Trosack has already expressed guilt over her workload and its affect on the tyke. Mr. Trosack has expressed anger, which can chair to resentment.The strong emotions felt by both parties need to be expressed in a vigorous essence to preserve their marriage, and a therapist specializing in family matters is an appropriate facilitator. She will meet with the couple together, as well as individually to assess their smackings about the pregnancy, the Tay-Sachs diagn osis and the feelings they swallow toward each other. The therapy sessions will continue after the birth of their baby, due to the nature of the disease and the stress the babys health will add to their lives.Teaching Plan for the Initial VisitThe teaching plan for the Trosacks initial visit at the high-risk pregnancy center will include the following Genetic diagnosisThe Trosacks need to understand the diagnosis of Tay-Sachs how it is transmitted, the probability of other pregnancies interrogatory positive, and what symptoms their baby is likely to develop. This will help them to understand they have done nothing wrong and prepare for the special needs their tyke will have. TreatmentNo treatment exists for the disease itself, but the Trosacks will benefit from learning about the symptoms their child may develop and how those symptoms are interact.They will be informed of ways to keep their child respectable and comfortable during the illness. Prognosis as it applies to Tay-Sa chsThe prognosis for infantile Tay-Sachs is poor, with most children becoming more and more worse until their expiry by age 4 or 5. The Trosacks need to be informed of this so that they can make preparationsfor themselves and other family members. Because most children develop normally until around six months of age, the Trosacks need to make love that an absence of symptoms does not mean an absence of the disease (NTSAD, n. d. ).They need to know that their condemnation with this child will be limited and filled with doctor visits and difficult medical decisions. With this education and advanced notice, they can become to discuss which treatments they may consider (medications) and those treatments they may not want to consider (feeding tube). Support groups and appropriate referralsWith the Internet, the connection of plunk for for families with Tay-Sachs has greatly expanded. The Trosacks will be given information on local set up groups as well as the internet communities available to them.They will be directed to the National Tay-Sachs and Allied Disease, March of Dimes and National Organization for Rare Disorders websites to connect with other families who are living with Tay-Sachs. This support will help the Trosacks connect with the only other people who know what they are going through, dispense their concerns without fear of judgment, and learn from those have gone through it all personally. Pregnancy informationInformation on pregnancy is necessary for any pregnant woman, especially during her first pregnancy.Over the length of the pregnancy, the Trosacks will learn about how pregnancy and fetal development progresses during each trimester, what changes Mrs. Trosack can swayphysically and emotionally, and ways in which Mr. Trosack can be of assistance to her. The first visit will specifically cover the development to while and through the end of the first trimester. They will view pictures of the developing fetus and the ways in which Mrs. Trosacks body is changing to accommodate the pregnancy.Ethical Implications of Having Genetic Information Available While genetic testing is a wonderful addition to the vast array of diagnostics medicine now offers, it can contain about new ethical implications. In reference to autonomy, genetic testing can sometimes notify information about ones family that was not known. For example, a Caucasian family may be move to find they are carriers for Sickle Cell disease, a disease found primarily in African-Americans and can bring about questions regarding the family history. These discussions may lead to the ethical issue of perceived invasions of privacy for other family members.another(prenominal) example would be the dilemmas that occur when there is a difference in societal believes and ones personal beliefs. First, persons with a genetic condition may prefer not to learn that their offspring is at risk for the condition, or they may prefer to have offspring with the same condit ion present in other family members (Halsey Lea, Williams, Donahue, 2005, para. 15). Secondly, some people may feel it is un clean to bring a baby with anomalies into the world. The results of genetic testing in these instances may necessitate decisions about continuing pregnancy, selective termination and adoption.A three example of ethical dilemmas in regards to genetic information being available is in relation to sympathy and nonmalificence. For example, clinicians caring for a pregnant patient find the baby she is carrying has spina bifida. The patient states her sister had spina bifida and that she wants to deliver her baby in the community hospital with a midwife. The clinician now moldiness balance her respect for her patients wishes with the concern she feels in allowing a baby with special needs to be born in an purlieu that cannot provide services that may improve the births outcome (Halsey Lea et al. 2005).A quartern ethical issue is that of justice. For, some geneti c disorders can be found with testing while others unflurried cannot. For example, the ability to identify carrier status for a mutation in the gene for cystic fibrosis is degrade among Asian American and African American persons than it is in Caucasians (Halsey Lea et al. , 2005). Thus, the results of testing performed on an Asian American or African American patient may not be a reliable index of their carrier status. Personal Thoughts, Feelings and Advocacy As a woman, this writer cannot begin to imagine the feelings felt by the Trosacks.After years of trying to conceive, they learn that they are finally pregnant only to find out their baby is likely to die by age five from a horrible, progressive disease. If in Mrs. Trosacks shoes, would this writer be hold out enough to continue the pregnancy, knowing the prognosis? I do not know. I am sure, however, that the Trosacks have a difficult road ahead of them. If I were Mrs. Trosack, I would expect to feel a constant state of gri efover the diagnosis and the life my child will not have, the loss of those milestones parents look forward to (first day of school, first dance, etc), the impending months or years of illness.I would hope that I could treasure the better moments I do have with my childfrom birth to death, holding her as much as possible, trying to focus on the symptom-free moments, taking as many pictures as I can to record her short life. I question how angry a woman would feel in this situation. Surely, even those women with strong religious beliefs question the why of the diagnosis and circumstance. Why, after all this time allow me to conceive if youre going to give me a child so sick? What is the topographic point of bringing a child into life if they are to suffer throughout?Why us? Would a woman facing this diagnosis feel as if everyone pities her? While reading the case study, I found myself feeling pity for her, knowing that she would lose her child in such a horrible way after wanting a child so badly. Despite these feelings, the Trosacks choice to continue their pregnancy is just thattheir choice. Many people think that being pro-choice means advocating for abortion. However, it is my belief that being pro-choice means advocating for people to make the best choice for themselves in particular situations.For, only those going through a particular situation know best how well or poorly they can handle a decision and circumstance. Their decision to continue a pregnancy after the diagnosis was made is a brave one and speaks volumes to their character and beliefs. The Trosacks case manager will work with each member of the interdisciplinary team to ensure they respect the wishes of the couple. The couple needs to know that they are supported and are being treated without judgment from the team members. She will meet with the team members to ensure they are able to continue treating with couple appropriately.If any of the team members express an inability to refrain fr om sharing their personal feelings with the couple, she will find desirable replacements. While the team members are entitled to their feelings, they are expected to keep those feelings to themselves when caring for patients. And, when patients are facing emotional and controversial decisions, the separation is even more important. Ethical and Legal Considerations When the Trosacks made the decision to continue the pregnancy after learning their baby has Tay-Sachs, they became bound, legally and ethically, to care for the child after the birth.Ethical considerations include the decision to bring a child into a life of poor health and early death after a progressive decline. Many people in society will judge them for this, and the child will be perceived in certain ways by others. Further, they will be approach with the decision to allow researchers to follow their child in an effort to gain more information about the disease in search for a cure. The child has no autonomy as a min or, and has no right to privacy when her parents are making the decisions.Another ethical question is who owns the genetic information? The genetic information is on the childs DNA, but the parents are the ones making all the decisions. Legally, there are several areas of concern for the couple. First, they are now bound to provide healthcare to this child, despite the poor prognosis. They must provide food, clothing and shelter, and keep the child safe and comfortable as she declines. The child will in the end develop problems with swallowing, and at that time, will require further interventions to maintain life.Secondly, they are required to provide medical care for the child and, with the poor prognosis, this is likely to involve many appointments, testing and medications or treatments. Third, they may have problems with insurance coverage, as some insurance policies may consider the childs diagnosis to be pre-existing, denying coverage for any treatments associated with the dis ease. Though this is certainly not ethical, it is legal in this country, and may lead to monetary problems and difficulty in continuing to obtain quality medical care.